h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I think - I really think, at long last that the vague light I can glimpse at the end of the tunnel might not be an oncoming train

No promises, mind, but for the first time in a long while there seems to be real hope in getting this blasted Back of mine if not sorted, then at least under control

Why?

Because, at long last, I've got not only a list of symptoms a mile long ( when have I ever not?) But - and this is the important bit -

I've got a complaint that actually matches the symptoms!

Well, 2 of 'em, actually - three if you count IBS.

Which is part and parcel of the first 2.

Anyway... it means



.... Tab A (Symptoms) actually matches Tab B (Ailments) I can finally go to the GP and say

"Oi! I think I've been misdiagnosed and I've been treated for the wrong thing this last 4 years.... I want to undergo tests for x y and z and get a confirmed diagnosiseseses please and thank you" (I'll work on the appropriate phraseolgy a bit later, but that'll be the gist of it. And the GP I'm with is actually pretty on the ball and very supportive, which helps enormously.



How did this come about? Pull up a cat, take the weight off...and I'll begin.

O-K

Lets assume you're aware I've got A Back Problem. Aches, pains and general fatigue have been with me most of my life, and, until The Back really made its presence felt, I just assumed everyone felt this grotty - what puzzled me was how the hell everyone else seemed to have so much more energy than me, and didn't even mention that they, too, physically hurt most of the time.

I certainly have had a form of (so far nameless - but we'll get to that bit in a moment or twenty) inflamitory arthritus since birth.

And like I've said, that was my normality, and as I was actively discouraged from complaining, etc as a kid, I learnt to work around it most of the time. I was never a fast mover, and always a lot stiffer than my contempories, and I always needed a lot more sleep, too - didn't always get it, but hey, no big deal. When you're a teen, sleep is for other people, and thats the way it was.

Always a little slower, and a little more clumsy than everyone else, but that was part and parcel of "me"

And I didn't moan about feeling in pain because that was the norm. Life has lumps and you deal with them.

I just didn't think I was dealing with stuff as well as I wanted, but couldn't *quite* put my finger on thewhy what and what can I do about it.

Fast forward to age 35(ish) Joy of joys I caught Chickenpox from my little dears when they went to school.

And yes, I had it when I was a kid, and the virus went "in" rather than out, so I didn't get the "pox" spots first time around, it went inward to my ears and eyes. Together with measles around the same time, they sucsessfully damaged my sight, and I spent a good few years being traipsed to hearing specialists to listen to "the little mouse squeak"

I had a wonderful childhood me!

ANYWAY, at age 35 I had full blown spots everywhere (and I mean everywhere) Chicken Pox Lurgi.......and to say I felt like poo on a stick would be understatement. To say I *looked* like aforementioned stick would be sheer stickism.

It lasted over 5 weeks.

And took a long long time to clear up, so I expected to feel a bit tired and run down. Its a virus, and adult chicken pox is a pretty nasty thing to have.

Note the telling phrase "its a virus", OK?

So I muddled on - I had kids to bring up, a life to lead, work to hold down - life, infact. But over the years, I became more and more exhausted, and more and more in pain - my back, which ached occasionally became unbearably painful, and around 3 or 4 years ago I finally had to admit defeat and stop doing the job I loved - my body wasn't functioning well enough to do it any more.

I was a massuesse. And a damned good one at that. And professionally, I was neither allowed nor expected to diagnose.



Basically, I could bearly move and when I did move, it hurt like hell. Constantly. 24/7, etc etc.



I made enough fuss and enough noise to eventualy be heard by the NHS, and was quickly shuffled off via the Rheumatolgist to the Pain Clinic, who finally gave me a diagnosis of Degenerative Spine and Osteo Arthritus.

And so began the long round of trying out painkillers and NSAIDs, Physiotherapy and general packed lunches.

Oh yes, and a few little operations - a Spinal Denervation which went pearshaped (its caused more nerve damage rather than cauterised the pain referring nerves, so basically, the cure wasn't a cure.)

Currently, I am being cured OF the first cure.

Which is a bit of a bugger, as we say in the trade.



Currently, I am having a 4 to six monthly call ins to the hospital to have around 45 injections in the spine

(possibly 60, I tend to lose count after the first 20 or so of em because they bloody well hurt)

and by the end of the op I'm gibbering in agony - they don't give you a General Anesthetic, you see, because you need to be conscious to give feedback to the surgeon

These injections are given to control the pain.

Apparently.



Personally, I just reckon it's the sugeon's way of having fun - inflicting pain legally - but I daren't say that too loudly, as the opinion might cause him to get offended

Though I have asked him in passing if,when regressed to a previous life, he ever had confirmation he was with the Inquisition.

Dr F's alright, really. He's one of the few consultant who's been helpful and willing to keep trying to control my pain. He might hurt like hell doing it... but he's game if I am. I wish there were more like him in the Medical Profession.



Now - running alongside this little drama, is my claim to the Department of Works and Pensions for Disability Living Allowance (DLA)

And they have always quibbled that the Diagnosis I offer them doesn't actually fit in with the difficulties I describe. But thats what I've been given by someone who is an NHS Specialist.

I've applied 3 times, and I have been refused yet again by the DLA - so I am going to Appeal, which means that I have to gather Medical Evidence.

THIS time - though gawd alone knows where I found it - I've had the strengnth of mind, and tenacity to keep fighting. Call it Survival Instinct if you like. Doesn't matter.

So in the last few weeks I have been canvassing the GPs and Consultants and Specialist I've been seeing, asking them all the same question - "Will you provide me with written Medical Evidence that I am, infact, being totally truthful with the DLA that because of the medical condition I have I am disabled enough to qualify for DLA?"

And every single one of them has said "yes"

One of the people I've seen, and asked today, was the Chiropractor (M), who has been of more practical help and through his constant work on the musculature, etc, has been far more beneficial to me. But he's an Outsider toi the NHS>

On the plus side, Chiropractice is now one of the few Alternitive Practices that is recognised by the NHS<

He spent a good hour questioning me, examining me, and doing "Reflexes" and stuff, in order that he had a completely up to date picture of How I Am, so he can write an accurate report for me

During the time spent with him, he said, suddenly:

"Jill, I think you've been misdiagnosed - you certainly have a *form of arthritus, but it's an inflamitory one, which affects your muscles and ligaments. And you probably *have got a Degenerative Spine and a touch of Arthritus in it.... BUT"



Doesn't time fly when you're having fun

Anyway, the upshot, M - who has sucsessfully diognosed several of my friends who also have Backs, and has had his diognosies comfirmed by conventional medicine, is almost 100% certain what I have is Fibromyalgia, coupled with this form of Arthritus he mentioned. Apparently, its quite rare, but it *is a recognised medical problem.

And no, I'm buggered if I can remember the name of it,but that's what pain *does to a person, eventually. Confuses them like hell, and new info takes a lot longer to go in and stick.

Which mean... now I have a proper diognosis, even if I don't get awarded DLA (I will simply try again until I do get it) I *DO have the tools to ensure that I receive the correct medical care. Because I've found, once you've got a name for it, then the NHS does have the technology to either cure stuff, or at least *control a lot of diseases.

Not all of em, but most of the non life threatening ones can have something intelligent done with them - providing they know what they're dealing with. Providing it has a recognised pattern of symptoms


The Arther-itus has been, and will be with me always; yes, it hurts, but I've lived with it all my life.

Fibromyalgia is one of those things that *can just go, but usually doesn't. It's a bit like a scar, I suppose, once you've got it, it's something you have for keeps. But it - and this so far nameless form of recognised inflamitory arthritus *can be controlled.

The 2 together?

Trust me, it's no picnic.



But everything fits now - all those symptoms and "whys" and oh boy it feels good.



Well, mentally, it does - a huge weight has been lifted off my mind.

I've been wondering "Am I being a hypochrondriac?
Am I simply amplyfying the physical pain in my mind because my life's been a bit on the tough side?
Am I trying to get the sympathy vote?
Am I, in short, putting it all on because I'm a weak, inadequate dodo who just wants someone to give a damn about me?

And the short answer to that is:

No.

I'm not weak.
I'm not inadequate.
I can live with the fact I've had a tough life without self pity or blame,
and although I'd like to have the joy of being special to a person who's special to me, I can live quite happilly without it.

Wanting something is not the same as needing it. I'm smart enough and comfortable enough to know and accept the difference.

In short, I'm fine.


But when you're in pain, and mithered out the the skull with painkillers and prescription drugs that arn't actually quite the right ones, the self esteem and the confidence eventually spirals down and down, until you begin to believe your own worst fears and nightmares. Which is where I've been.

M's diagnosis sounds toally accurate to me - Viruses (in this case Chicken Pox)(both times) triggered off 2 autoimmune problems, both of which are recognised by the NHS and have solutions.

Not ideal ones. Not always. But I can ensure I can get the best possible course of action because I believe now I know what I'm dealing with.

And that's OK

I'm not even going to begin to tell you how relieved I feel, because we'll be here all night, and I've got wine to drink, and an evening to enjoy. I've got a friend coming to visit me this weekend, and Stuff to do and... wiv a bit of luck, a better quality of life to enjoy once I've ploughed thru a bit more burocracy and palava.

It feels bloody great, even if I have got a body like an un co-operative set of spanners.

Even spanners can be alright, with a bit of work.

And these ones are going to get sorted if I have any say in the matter

(Oh, I also have the joys of another "pain Killing" set of In Patient Injections on Monday, and the dubious pleasure of a uterine hydroabalation 8 days later, but that's by the by. I'm not looking forward to either, but I'll deal with it)


Anyone ploughed thru all of this?

Congratulations.

Have a beverage of your choice and a banana

And a for being as tenacious as I am!

Read every word evadne ..... hope this is a turning point in life for you , everybody deserves one and from all that ... you more than most

Good Luck ...

Every word? Good heavens - and you're still awake?

Have another banana. I've almost finished the wine so I can't offer you any.

Thanks for your good wishes tho. It's probably about time I had another turning point, and now I know where to push I reckon I'll be fine

Got to be awake .... at work , only ten minutes to go though .... and who knows in another few months I could be retiring ....
Probably end up doing part time eventually ...... as I am sure I will get bored ....

Still time for Home .... I wish you all the best

Billy60.

Do I take your a night owl then ???? ....

Not particually - but that last glass of wine is taking a heck of a time to get thru this evening for some strange reasen.

Oh well

I'm persistant if nothing else - just as well, really. I'd not have got this far if I'd given up just because something was a tad on the challenging side


I thought you said you were going home from work?

Or are you home from work already sorta thing?

Home .... in bed .... chilled .....

Nothing wrong with a glass or two .... though Id sooner it was Captain Morgans ... not a big drinker though , always seem to be driving somewhere so not really worth it ..

In bed, and chilled.....and on the PC????



This is slightly worrying. When I'm in bed and chilled the *last* thing I want to be on is the PC!

I don't usually drink a vast amount... but at least I've an excuse of sorts.

I'll figure out what it is in a while

In the meantime, I'll chug womanfully thru this almost empty glass and try and sleep the sleep of the just afterwards.

And if I don't?

I'll be too busy over the weekend to worry about it - I can always have a kip after the op on Monday. They don't give you anesthetic... but if you yell loud enough, you do get "sedated"

And it's well worth kicking up a fuss for the "on the Nash" Valium - the bloke who does the op knows damned well I'll kick him hard if I don't get it


And as the first port of call is his crotch,(I'm on my tummy) he's sensible enough to order sedation *before* I do damage.


He didn't believe me I'd kick him the first time - but I simply blamed it on over active reflexes.





After that, he learned to keep his distance

And his dignity.





Sleep well

Your Doc must be terrified of you .....

As for being in bed and on the PC .... bear in mind I have only just got in from work and the old grey matter is still racing a bit ... so sleep is still away off ....

Anyway .... have a nice weekend yourself ..

for the natter

Billy60.

Small world and we just talked!
You may have the same 2 diagnosis that I have
You always sounded so eerily like myself and my twin.Including the lengthy time to get diagnosed and helped.

I have the diagnosis of Fibromyalgia and Degenerative Joint Disease of the spine ,a type that normally hits males. I had polio and TB before age 5 plus hit by lightning in my late 20's . They say the later shocked my immune system into self attck mode.

TB history contra-indicates injections, some other things will too.
It's possibly a longshot but you may want to give the injection doctor a heads up on what you have learned. Mention pox and Fibromyalgia. Do you know for sure they help you or are you going through enough medications changes you are not sure?

I recognized you as a fighter
I am glad your tenacity paid off. It is well worth going to a Rhuematologists or an Osteopath if you do not get answers from others.
They are the only ones that take the whole skeletal system into account.

Well done. I know exactly how you feel having a name. That was the happiest day I'd had in a long time. You are no better off physically but you sure feel better having the proof. Hopefully you will get disability through now.

You may have the same 2 diagnosis that I have

Ooo-er, that's quite spooky

(It hurts, doesn't it)

Yeah - I too have felt you and I are very similar in many subtle ways Abbi - diffferent routes, but similar (physical) reactions in a lot of ways ailment wise; different ways of expressing things, but generally speaking, very similar conclusions drawn. Being a tad crooked physically (as they say in Australlia) possibily can wonderfully concentrate the philosophical/getting the answer to life, universe and everything process working overtime. Lets face it, if, on the days you can't move, one has to find *something* to do/think about, I guess thats what the fighters *do. Think, cogitate, and above all...*learn!

>> I have the diagnosis of Fibromyalgia and Degenerative Joint Disease of the spine ,a type that normally *hits males*.<<

H'mm. Another uncanny similarity...but I've often wondered if a lot of what I "have" is related, indirectly hormone imbalance. M the Chiro's books and notes confirm that this "male" type arthritus is generally acknowledged to be a chemical imbalance between the Sympathetic and Parasympathetic nervious system - and "shocks" to the system, be they physical, medical, organic or emotional can cause the auto immune system to latch onto itself. Chemical imbalance, and hormonal imbalnce can be much the same sort of thing

Again, differnet ways of expressing the same route.

I've always thought of myself as a "person"; not sexless, (not with the figure I've got!) but a member of the human race, rather than one of the girls, or one of the lads. I prefer the more direct, logical "male" thought process - ie, using one's brain and more agressive instincts - the *active approach more comfortable, for me, rather than the passive, emotional approach females generally have.

Over the years I've tried to integrate the two - thus becoming a person, rather than "a woman" or "a man" as such.

Nature would dictate that I'd be led (passive) by the instincts and feeling (female)
Nurture has dictated that I *act by the instincts and intellectual process (male)

Of necessity I've become what I currently *am - and thats fine and good

I don't think or believe I can "will myself into physical well being

But neither do I believe that relying on outside intervention is the total answe, either

It's getting our balances right, I guess; individually. By ourselves and with other's expertise. Together but separately.

And generally speaking, as long as both "I" and "they" work equally together, I have real hopes of..if not a cure, a true resolution



And you're right - it's a good day, and a good feeling when you've finally got a name and a goal to go for. If its tangible, it's dealable.


I can cope with absolutely anything, just as long as I'm able to understad exactly what it is I'm dealing with


I imagine, you're very similar


Tough


Catch you after this op Abbi.

In the meantime, keep smiling.