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The UKFibromyalgia Forums • View topic - Not had the diagnosis yet.



Not had the diagnosis yet.

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Not had the diagnosis yet.

Postby Smurfinator » Wed Sep 04, 2013 4:49 pm

Hi all. I'm in my mid forties. I had my gallbladder out almost two and a half years ago. That''s when all my problems didn't just surface, but they pretty much ganged up on me and I'm still no clearer on what's going on. I'm under a Manchester hospital and for the last 18 months, I've had test after test after test and everything has come back clear. I've had cat scans, ct scans, xrays, both ends of the endoscopy unit and still no clearer what's what.

If I eat certain foods, I get really bad migraines, every other meal is set to explode forth when the 'vomit fairy' decides to make an unplanned appearance after I've eaten or drunk anything. My ankles puff up to the point where it's impossible to walk (hot weather does it), I can't bend over as that helps the vomit fairy and when I do bend over for any length of time, it really hurts.

I can't change my bedding without it crippling me - same goes for laundry. I wash as I wear (no washer) and hang on a maiden, but it doesn't generally go very well if there's more than a couple of items. I've got pretty bad IBS (2x diagnosis: 1998 and 2012), I'm prone to stomach ulcers, I'm run down and fed up of my legs quaking if I try to attempt any stairs. Nervous tics? oh plenty. Every night. If I lie on a particular nerve, the chances are strong that I'll end up on the other side of the bedroom.

In fact, today, I've been to see my GP and I will admit, I broke down big time. I just couldn't take this crap any more. I'm maxed out on tramadol and I've been on 75mg amitriptyline for ages and that's been upped again today... I'm so tired of fighting myself to get through a day without accident or pain and it's becoming a never ending cycle that I'm just not getting out of. I'm tired of going around in circles and getting nowhere.

Another friend of mine suggested it *could* be FM. I just know that my health has slowly but surely spiralled downwards. I've had peaks and troughs, days where I felt great, had energy and gone out and done something to tell the world 'here I am!'. Today, I just feel like I want to crawl under a rock and stay there... I'm not exactly feeling 100% right now.

And that's the other thing - I've had depression since 1992. I've had everything that could be thrown at me and I've taken it in my stride from counselling to medication to life coaches. Time is a horrible thing when it wants to trip you up and I do that fairly regularly. I hate this situation but all that's standing in the way of progress is a diagnosis.

If I have to be honest, when I feel like this, it bloody hurts. The area under my ribs on the right side is tender and has been since the gallbladder was removed. I just haven't been right since. I also broke down in the chemist shop too. I have really had about as much as I want to take with how I feel right now.

Sorry for the long and winding greeting, but I had to get it off my chest so I can cry a little less later on.
Last edited by FluppyPuffy on Wed Sep 04, 2013 5:19 pm, edited 1 time in total.
Reason: Split into smaller, clearer paragraphs for easier reading.
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Re: Not had the diagnosis yet.

Postby FluppyPuffy » Wed Sep 04, 2013 5:38 pm

:welcome: to our little sanctuary Smurfinator :cow-wave: :cow-wave:

I'm sorry to hear what you've been going thru over the past two and a half years :grouphug: :grouphug: :grouphug: Being stuck in LimboLand is one of the most :scream-1: :scream-1: :too-upset: :too-upset: :pull-hair: :pull-hair: places to find yourself :waiting: :waiting:

A lot of what you have described sounds very much like some of the various problems that we experience on here between us, so if you're now wondering if FM could be the reason for your problems, you'll need to see your GP to get things started off on the dx'ing path. If you use some info from a reputable source such as on or from this and go thru your symptoms to show where things seem to tally, hopefully it will help to start getting you some answers.

There is lots of info and advice across the boards, so have a look and a read around, you may find some ideas and suggestions to try out that might help make things feel a little easier for you.

Anything that you want to know about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave:


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Re: Not had the diagnosis yet.

Postby denys » Wed Sep 04, 2013 9:01 pm

Hi Smurfinator and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: I'm sorry you have been suffering without answers for this long but unfortunately your story isnt unusual, but hopefully we can offer you some support :-D :-D
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Re: Not had the diagnosis yet.

Postby Smurfinator » Sat Sep 28, 2013 12:14 pm

Thanks all. I had to go to the docs on Wednesday and sort of approach this whole thing one way or another. I asked for a limited ability to work med certificate and she did, reluctantly, but considering the amount of total crap I've had lately, she signed me off to make sure that things could be addressed. She asked me what to put on it and I blurted it out 'Fibromyalgia' and she looked at me and it was as if a light had suddenly lit up.

For the previous two nights, I'd had weird dreams and had woke up biting my own cheek. When I woke up Thursday morning, no brain fog, just the usual 'sit up first before moving' thing I have to do, and no nightmares. I did have painful hips and this and the backache I get and the fact that my mum was in her late 30's when she developed osteo-arthritis means that on Monday, I've got to go and have a back/hip x-ray. I also needed an eye test to make sure that there's nothing sinister behind the migraines and the stammer I've acquired. Once I have the results from both, forwards seems a nice progression thank you :-D

As it goes, I'm ok walking on the flat, but throw a hill in and 'hello issues!'. Sunday, I'm going to be in Manchester marching in protest at several things (woman of many hats) and yeah,I've hardly had a day this week where I've kept still, but it's all good.
I've told several local friends because they've suffering at the hands of Fibro and we're seriously contemplating forming a support group for which we can get funding so that our lives are made better - be it food resources, devices for users, anything.
I must also point out I'm the black sheep of the family. I've never worn glasses, yet, everyone in the family has them... including my daughter.

I have incredibly pin-sharp hearing too. I think it's been an asset being able to pick birdsong out through a throng of people and identify a squirrels call from half a mile away and know exactly which branch of tree it's calling from. (same with birds too)
I've also got a hospital appointment at Manchester Royal Infirmary on 7th Oct and I'm going to throw the specialist the word to see if she catches it, and if so, if she acts on it or whatever...

But it's feeling so liberating now that family and friends know. When I get down, I get really down and go quiet and I'm best left there until I have to surface.

My daughter (who has the same clicky jaw prob as I once had) thanked me. I told her as we were walking around a poundshop in town.
Best to drop it into casual conversation and she and I have no hidden secrets... and yeah, I just told her to enjoy doing what she can while she can and do more. She's into horses and all that and she's now armed with the info she needs to hear.

My mothers grasp of the spoken word though, that's an other issue entirely... :-p
(seriously, do not encourage her to watch 'the barefoot contessa' on the food network, hearing is believing!)

So, I'm bracing myself now for a day of protesting in Manchester tomorrow. Can't wait. Got my walking stick ready, got my bottle of much needed ginger beer aswell as painkillers and camera on standby.
It will hurt like hell tomorrow night, but it'll be WORTH every single ache! :-D
Last edited by FluppyPuffy on Sat Sep 28, 2013 12:37 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Not had the diagnosis yet.

Postby denys » Sat Sep 28, 2013 3:07 pm

You go girl, sounds like you are made from strong stuff :-D :-D :-D :-D :-D :-D
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Re: Not had the diagnosis yet.

Postby *Lisa* » Sat Sep 28, 2013 4:27 pm

As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Not had the diagnosis yet.

Postby ru.campbell » Sat Sep 28, 2013 6:51 pm

Have u had a blood test?


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Re: Not had the diagnosis yet.

Postby FluppyPuffy » Sat Sep 28, 2013 8:37 pm



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Re: Not had the diagnosis yet.

Postby Smurfinator » Mon Sep 30, 2013 9:54 pm

Sorry about the confusion - erm.. yeah. About that. I've had a back x-ray today and a well-timed eye test (not had one since leaving school)
and I don't have to wear glasses.. yay! As for the back? well, me and 55,000+ other people went for a little walk around Manchester yesterday - needless to say, I at least had something for the hospital to have a go at and yeah, my back did not like that one little bit!
My doc is pointing everything down to Fibro because of all the symptoms that have been surfacing for so many years. Once she's got the xray back from the hospital, then we're going to start on getting this all sorted one way or another - by pre-labelling it all, we're hopefully cutting to the chase. But with Osteoarthritis in the family, well, we have to nail the nasties out first. (My mother was 35/38 when she was diagnosed with OE. trust me, my daughter loves me at the minute... :crazy: )
The xrays should reach the doc in about 7-10 days time, so I'll make my appointment to see her at the end of next week.

Yup, you're right. I'm made of good stuff. I've been fighting with my health for the last 20+ years, you tend to develop a thicker (if itchier) skin with time (and several food allergies/intolerances). Not least of all the ability to be able to lie down on the floor, but not get back up again.

It's all early days as regards how to approach this particular horse, but at least now, we've got a saddle in our hands and the riding crop on standby.
As for treating it like it is, it's possibly the best option than treating everything on it's own.
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Re: Not had the diagnosis yet.

Postby felinefine » Tue Oct 01, 2013 9:38 am

There seems to be a big difference on how a diagnosis works, I waited two years of pain and being fobbed off by my GP and was referred to rheumatology I then had the x rays and blood test, abput 2 months later I went back and was in a flare up, the doc did the 'I'll poke you in various places and tell me if it hurts' and then gave me a steroid jab and said if this doesn't help its FMS. I had an appt made for 3 months after!!! in between I was in hosp for a TIA who prescribed amitriptyline 10mg increased to 20..which hasn't helped.

My nephews GF went to a different hosp in the same NHS area and had a conveyor belt of an appt, saw a doc had x ray there and then had blood tests and back in the docs office and was told there and then......

Hope you get a definite Diagnosis soon x
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