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The UKFibromyalgia Forums • View topic - Hello all. :)



Hello all. :)

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello all. :)

Postby onenovembernight » Fri Jan 20, 2012 1:33 pm

Hello. :-)

First of all let me say that this will be a fairly long post, and also that I haven't been diagnosed with Fibromyalgia, however just recently, about three months ago, I went to see a Rhum and after many questions and the pressure point test thing, he decided it was just lack of sleep and my mood. Apparently I was three points off the recommended 11, though I think it is, I've done the research and for six years I've looked for an answer and the one I keep coming back to time and time again is Fibro. And now the story.

I've had chronic pain since I was late 12, early 13. It started off in my right wrist, and it's been thought that it was because I was an avid musician, playing the clarinet, I had given myself RSI, then the theory was tendonitis. After a few months of rest (which included getting a lot of bland, restrictive splints, and it not getting any better) the recommended therapy was physo and when that didn't work, a steroid injection to my right wrist. During this time there was x-rays and a contrast MRI. To be honest the early details get a little fuzzy, I know after the injection everything started getting worse; gradually I got pain in my left wrist (a result of overcompensating with the left wrist they say) and my elbows, shortly followed by shoulders, then upper back, middle back and lower back. This all happened in about the space of 2/3 years. During those 2/3 years I've two more MRI's - one on my right wrist with an arthrogram, and an MRI on my neck (the arthrogram showed minor tearing but nothing else) and I've lost count of the amount of X-rays and blood tests. I've been put on various painkillers and it's only the stronger, opioid based stuff, which takes the edge of, though I hate the feeling of lethargy. I also had a pilonidal, which made the whole lower pain worse as I had to have surgery and it took just over 7 months to heal.

For the past two years I've noticed an increase in the pain coming from my hips and I also have problems with my left knee and foot. Most of my friends think I'm joking when I say that the only part of me that doesn't hurt is my right leg. I wish I shared in their humour.

My most recent round of tests have included another X-ray, though this time they found a slight minor concave to the left though they think that this is nothing; an MRI, this time on my thoracic and lumbar spine to see if there is any damage - there wasn't, a blood test for arthritus - which came back negative. And the Rhum who ordered a Vitamin D test - I'm guessing as they haven't asked me in the results were fine.

Fast forwarding today, I have a doctor who after the last set of tests won't send me to a pain clinic and seems disbelieve and has put me back on paracetamol because apparently it's strong stuff and will work - though I've told him countless time it doesn't. He's told me that he'll adjust my pain meds if the need arises but that I should get myself out of the medical system because it won't do me any good - psychologically - that they're 'keeping me on retainer' as I'll make the pain worse.

The pain: Right, well the pain is never really the same. It gets stabby, burning, shooting (enough to have me drop to the floor, oh joy), underneath the skin (if that makes sense?), gnawing, aching, tender, throbbing, tiring, and I'm sure you know what I mean by now.

Other things: Periods are ridiculously painful and my mood always takes a sudden drip around them, I get numbness in my back at random occasions followed by pins and needles, I feel exhausted a lot of the time, I have difficulty concentrating at time and though I wear glasses my vision never seems 'right', too blurry.

I'm 18, I've given up basically everything I enjoy - I used to be an active, sporty, outgoing person - a musician, but now I can barely do anything or think straight. I don't know what to do anymore, and I know there are people who have had it longer, and I really admire your strength and perseverance.

So hello a huge everyone I guess. :wave: Also, the smilies you have are amazing! :dogrun1:
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Re: Hello all. :)

Postby Adele » Fri Jan 20, 2012 3:36 pm

hi. unfortunately your's isn't an unusually story. i think the best thing to do is to see another GP in the surgery and see them all if you must. if you have no luck there then change surgeries. keep up asking for referals. have a look online for a specialist that is interested in fibro and ask to be referred for a second opinion. if no-one believes it's fibro then see a neurologist, anyone that will listen.

i have been to see professor davies at guys hospital and he is meant to be the top expert in the country. a lot of us on here have had bad experiences with him, and some good, so personally i would avoid him. i recommend bath rheummatology hospital. if they can't diagnose you as an outpatient they will admit you (well they did in my case).

some GPs are diagnosing fibro themselves so you may get lucky that way. painkiller wise if all you've been prescribed is paracetamol then you must be suffering. the strongest OTC painkillers are: solpadeine max - the highest strength paracetamol and codeine you can buy, and cuprofen plus/solpadeine migraine - both of which are the strongest ibuprofen and codeine tablets you can buy. paramol you can also buy over the counter and contains paracetamol and dihydrocodeine. DISCUSS YOUR PAIN AND OTHER MEDS WITH A PHARMACIST FIRST IF CONSIDERING BUYING THESE. you can even buy them online on amazon.

best of luck getting a diagnosis, Adele :-D
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Re: Hello all. :)

Postby FluppyPuffy » Fri Jan 20, 2012 5:08 pm

:wave: :wave: and :welcome: to the forum :mrgreen: :mrgreen:

Glad you like the smilies, we do have a pretty eclectic range of them :f1-car: :f1-car:

I'm sorry to hear what you're gong thru in trying to find an answer to the cause of your symptoms. Sadly your story is very similar to what others have gone thru in trying to get this answer :banghead: :banghead: :banghead:

I'm not sure what else to suggest with you already having seen a rheumy and you being referred on to see a neuro bod :-? :-?

With what your GP has said about meds and things, I would consider seeing someone else, or even changing surgery with those kinds of responses :swear1: :swear1: :swear1: There are various meds that can be used to try and manage your symptoms. Knowing how I feel, paracetamol isn't strong enough to manage things :facepalm: :facepalm: :facepalm: This linky tells you about some of the meds used to try and manage things like FM. It might be worth having a look at what there is, then maybe go back to see your GP (or a different one) with a different approach, such as you've been looking into things, have come across this info, and you want to know which of the meds might be suitable for you to try.

In the meantime, there is a lot of info and advice on here that you may find useful while you're trying to get a dx, plus we may be able to help you with anything you may need/want to know :clap: :clap:


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Re: Hello all. :)

Postby shazq » Fri Jan 20, 2012 5:44 pm

:welcome: to the forum :fingerscrossed: you get some answers soon. Try to see another GP if you can and get refereed to a Rheumy. :goodluck1:
As a Public Moderator 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.
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Re: Hello all. :)

Postby garytees » Wed Jan 25, 2012 8:25 pm

evening onenovembernight :yikes: thats me with spiky hair after my fm flare up :oops: anyway i think u hav been great the way you hav managed to cope with everthing u hav gone through maybe be better 4u if u tried another doc and maybe u could beref to the rheumy clinc 2 anyway i thought i had fm a bad until i read all of what you hav had to put up with the last few years life sucks :-| anyway its great about are fm club as we are here 2 help are fello sufferers as at the end of the day we are all in the same fm boat so :crazy: take care of yourself :flowers: 1novnight gaz :crazy:
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