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The UKFibromyalgia Forums • View topic - afternoon all



afternoon all

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

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afternoon all

Postby Brett Dale » Fri Nov 29, 2013 4:43 pm

Hi all im Brett

My story is a long one but ill try keep it short.

I suffer with hypermobility and my specialist is pretty sure i have fibro, waiting 3 weeks now for 13 vials of blood tests to come back to rule out everything else, pretty sure they will come back with nothing as over the years iv been tested extensively.

For me the pains all started back when i was 15/16 after one of the first combined inoculations i forget which one it was but it was the pre-cursor to the MMR containing only 2 of them. within a week i was struck down with flu like symptoms, high fevers and extreme joint pains worst in the knees but including lower back, shoulders, elbows, ankles and hands.

for years after i was plagued with reoccurring high fevers and joint pains that would see me for short periods struggling to walk. with time the fevers subsided and i learnt to cope/block the pains. i saw doctors and specialists but was told its growing pain. the pains have been there most my life, but as long as i set my mind to it and didnt think of them, i could cope except for the odd flare up. Roll on 10 years and i suffered a mass multiple PE and clot in the superior vena cava (the later saving my heart from pulmonary hypertension).

I was a walking talking miracle according to the docs as i walked in out of breath but joking, in no pain and walked out alive with a healthy heart. i didnt feel like a miracle tho as i was left feeling breathless and permanently fatigued. although no dr would state it on the record, it was assumed to be due to scarring in the lungs. roll on a few years and no improvement, add to that all my pains have started to worsen.

i can still block and control the pains but theres days when i have to take pain killers. The medical diagnosis was "its because you have grown so tall." No mention of hypermobillity yet it was actually the physio that spotted that on one of my many visits for my knees that never seemed to help.

Were nearly up to speed now, the last 6 months of life have been hell. pain has increased to where i cant control it anymore, my whole body hurts except maybe and ear or on occasion a toe. painkillers used to work but gradually they have stopped having much effect. i started with 2 in the morning 2 in the evening progressing up to 8 throughout the day without relief (co-codamol).

Finally went to see a gp and he decided to try me with strong nsaids which did nothing than burn my stomach out. after 2 weeks of pure pain he reluctantly put me back on cocodamol and arranged me some physio for my knee (i had complained about a whole lot more). With luck i saw a different gp about my anxiety issues, in discussing why, i explained the pain im in and he jumped on the case, sending me to a specialist, which now sees me at the point of waiting, wishing for something to just even lower the pain. i have a high thresh hold for pain i can cope with it, but not like this, its getting to be to much throw in the IBS, the brain fog, general numbness, inability to sleep......

Well, enough ranting from me, fingers crossed they get me sorted and a big "i feel you" to all those out there also suffering.
Last edited by FluppyPuffy on Fri Nov 29, 2013 9:45 pm, edited 1 time in total.
Reason: Split large paragraph into smaller ones for easier reading.
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Re: afternoon all

Postby FluppyPuffy » Fri Nov 29, 2013 10:14 pm

:welcome: to our little patch of FibroVille Brett :cow-wave: :cow-wave:

I've split the large paragraph, which explains what has brought you to us, into smaller ones that are easier to read. This is because a number of us on here, incl myself, struggle when reading larger blocks of text, often losing where we are and missing out what could be important parts of what is being said.

There are a few on here who are at the dx'ing stage of their journeys, so you're in good company. And for some, knowing that they're not alone with things can help make things a little more bearable.

There is lots of info and advice, support and understanding on here. There's also a sense of fun and and a bit of daftness too, as it all helps with getting thru the FibroDays :bear-dancing: :bear-dancing: :bear-dancing:

Have a bit of a read of a few things when you get a mo, you may come across some suggestions to try out that could help make you feel a little more huu~mon :alien: :alien: :alien:

Wrt to meds and treatments, as well as the ones you've mentioned, there are a number of others that can be used in helping manage symptoms. This tells you about some of them. With what you have said about your current ones, maybe having a read, then talking to your GP about the suitability of others you haven't already tried could come up with some more effective alternatives for you. There are also other things, such as a TENs machine and/or heat packs that can be used to help ease affected areas.

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


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Re: afternoon all

Postby denys » Fri Nov 29, 2013 10:26 pm

Hi Brett and :welcome: to the forum just sorry its because you may have FM :cow-wave: :cow-wave:
Denys

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: afternoon all

Postby Brett Dale » Sat Nov 30, 2013 1:01 am

Thanks for the welcome all.

Thank you fluppypuffy and i apologise, i understand exactly where you are coming from as i have been suffering with the same the last few months. Ordinarily i would proof read after typing up a block of text and break it down into shorter paragraphs, ill remember for future ;).

As far as different treatments that may work, this is the route i am on at the moment, my latest specialist visit and barrage of tests has come about as i went and asked for something different as the current meds were not working, 3 or so months down the line and im still waiting for them :( . On a plus side once this specialist makes the diagnosis i will be given access to the local fibro clinic with subsequent access to all sorts of treatments and help.

For the time being i have knee supports that seem to help a little (i think due to the heat build up), co-codamol that sometimes take the edge off the pain but still leave me in agony (just a more controllable level of pain than before) and i have recently invested in some tens units, one with gel pads and one with a knee support. I find the tens unit helps a fair amount alleviating some of the pain for anywhere between 1-3 hours, but i have cut back on my use of the tens machines as i was finding that when the pain started to return it was coming back at a higher level than before.
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Re: afternoon all

Postby darricottgirl » Sat Nov 30, 2013 5:23 pm

Hi Brett, I only joined yesterday so we can be newbies together!

I was diagnosed with hypermobility a number of years ago after spending my teenage years going with numerous pain/strains/etc and being told I had growing pains.

I have problems with my left knee, since driving - and I am sure you have probably tried it a million times but when the pain is too awful I smother it in deep heat cream and wear knee supports, and it does ease the pain a little. May be worth a try?

V x
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