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The UKFibromyalgia Forums • View topic - new to forum, new to fibro



new to forum, new to fibro

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

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new to forum, new to fibro

Postby karla » Mon Oct 27, 2014 2:33 am

Hi everyone

my name is Karla and i am new to the forum and new to fibro, i was diagnosed last week and my world has turned upside down in that time. :(

i have been reading this forum for the last few days, most bits over and over due to lack of concentration. like most of you i have had different symptoms over many years and been diagnosed with different things the doctors thought i had which turns out i never had.

i have depression and have been treated for this longer than the symptoms of fibro, i think but am unsure my fibro started when i had a gastric bypass 5 years ago. this was when not only my body changed, my mind set changed as i had no counseling for the bypass and it really messes with your mind and new problems (symptoms) started.

first server back problems which they said was due to weight loss (8 stone in 5 months) had MRI came back with disk problems. MRI came after months of moaning my legs kept going tingly and they felt cold and tight, had my blood flow in my veins checked first... normal.

between everything first starting and now i have been diagnosed with raynaud's.. haven't got. eye prescription changed from long sighted to short which was put down to diabetes plus many other things but for the life of me i'm sat here and cant think of any of it yet 10 mins ago i had a list in my head.

anyway the point is as i have read others symptoms i thought or shouted at my hubby 'i've had that and was told its blah blah blah'

it seems like i have had fibro all along but it has been like a puzzle the doctors have finally put together. the rheumatologist took one look at my notes and said all the blood tests showed nothing, i have spinal damage and a lot of pain everywhere so it is fibro. years of moaning and in 5 mins he gave me a label. :-|

i have 2 girls, both teenagers not good for the stress level and i am currently a student. i was aiming to become a midwife but guess this is no longer possible.

i have had overall pain for the last 3 weeks and it seems all symptoms are getting worse. i'm on tramadol and co dydramol and waiting for referral to pain clinic but due to the gastric bypass there are lots of medication i can not have. does fibro get worse over time or is this it?

i have applied for pip and have so many questions for guys but my mind is blank.

thank you reading and knowing i am not alone really means a lot.
karla
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Re: new to forum, new to fibro

Postby Annie54 » Mon Oct 27, 2014 7:13 am

Hi Karla. You ask does it get worse over time and I noticed that a couple of people on Facebook have said it does. Just to put the other side of the story, I think it depends on what you do. I believe that technically, it is not a progressive disease like MS for example but if you push yourself physically then you will get a bad reaction. I have found the trick is to pace yourself, accept that there are things you cannot do, at least not all the time, and rest as much as you can between activity. This gives you some control over the situation. I believe that I have had fibromyalgia all my life but was diagnosed about 9 years ago (I'm 60 now) and the diagnosis explained so many things. I do think that you can live a reasonable life with this condition as long as you are not in "fight" mode all the time. If you try and fight it, it just feeds on that and the pain get worse. Work round it, decide what's really important to you and give your time and energy to that. I know everyone with fibro has different experiences but I do hope that you can get your family to support you and that now being able to put a name to what is going on will help. I too was diagnosed with chronic depression, that seems often to be part of the package as well!! I am glad you are getting treatment for that. Chin up - you are not alone!
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Re: new to forum, new to fibro

Postby Theresa34 » Mon Oct 27, 2014 10:18 am

Hi I was diagnosed in feb this year after sudden symptoms starting in Jan. I have had lower back pain for years and insomnia for years which all seem to be part of fibro. I am ine of those who fight the fibro. I don't mean that I purposely do things to hurt my body but I fight it mentally everyday as its so easy to slip into a depression with this condition. I do get frustrated and api allow myself a little pity party but then I bring myself up again and try and be positive. The memory and brain fog are really bad and the most frustrating! I'm still learning to pace myself and I do still overdo things. I've recently restarted using Epsom salts in my bath (used them last year then stopped), and they really help soothe my sore body. I've also ordered a heated under blanket that is meant to help the aches and pain. I guess its like a nice warm bath you can sleep in and not get wet or cold :lol:

I have three children who are the reason I drag myself out of bed everyday. I'm grateful for that. Even though most mornings i struggle to wake up :-| I don't currently work but have a lot of household/child responsibilities while the other half brings in some cash. Some days are pretty good and some are mixtures. Ok one min, not the next.

Hopefully you'll find a happy medium. We are all affected differently. I even use a cane once in a while. Such a random condition!
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: new to forum, new to fibro

Postby FluppyPuffy » Mon Oct 27, 2014 1:45 pm

:welcome: to our little FibroFamily Karla :cow-wave: :cow-wave:

I've jiffled you over into here with this being your intro as it's a more suitable board, plus you won't drop down into the deeper, darker depths of the forum where the DustBunnies dwell as quickly as you would have done where you had originally posted :cow-wave: :cow-wave: :cow-wave:

How you're feeling at the moment is fairly typical of what happens when you are told you have FM. With the vagaries and the complexities that come with the condition, it does leave you feeling like everything you knew as life has been ripped away from you, leaving you dumped on your head, with loads of questions but no answers to them at first. If you can give yourself a little time, things will start to settle and begin making a little more sense to you.

Your story of being dx'd with different conditions which have turned out not to be the right ones is a fairly familiar one unfortunately :facepalm: :facepalm: :facepalm: The nature of FM, as well as its many symptoms and associated problems means it can present itself as resembling other conditions which share the same sort of symptoms. This can lead to an initial dx being given, but as other things develop, become apparent, this brings the initial dx into question. So the process of trying to find out the cause of the new/additional symptoms starts again, and takes time, all of which adds up and causes additional frustrations :facepalm: :facepalm: :facepalm:

As Annie54 has said, FM isn't considered as a progressive condition because it doesn't cause changes and damage to the body like something such as Arthritis does. However, this doesn't mean that things can't/won't change over time. As you learn more about the condition tho, esp how you are affected personally, it can help with spotting these changes a little earlier, and if things are put in place to allow for this, it can help make handling these changes a little easier to deal with.

Your gastric bypass may have been the trigger for FM developing, with the actual root cause of FM yet to be identified, it is difficult to say definitively what actually is the cause. However, anecdotal evidence does suggest that trauma from surgery, accidents, other health problems, emotional upset, as well as a whole host of other possibilities could be at the root of what affects us.

Wrt your studies and aim to be a midwife, whilst things seem rather bleak and dark at the moment, this doesn't mean that they always will be. You may find that with the right cocktail of treatments and therapies for you, you are able to continue following your dream, eventually reaching it, even if it takes a little longer than you originally thought it would. Or you could find yourself veering off in a different direction, possibly one that you may not have considered previously, which brings you as much pleasure and enjoyment that being a midwife could have done. It is possible to have a quality of life, even with a little :bear-dancing: :bear-dancing: :bear-dancing: thrown in for good measure, with FM in the mix.

Think I've waffled on at you for long enough now, so I shall bobble off for a while :penguin: :penguin: :penguin: Anything that you're wondering about, either have a look to see if there are any topics on the boards {the Search box is good for doing this} or ask about it. It doesn't usually take too long for someone to come along with a reply :cow-wave: :cow-wave: :cow-wave:


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Re: new to forum, new to fibro

Postby sylviahughes » Mon Oct 27, 2014 5:46 pm

hello my name is sylvia
I have just read your forum and i am like you new to this site .
i know what you mean i have had this now for 4 years plus and i am getting now where with doctors just your sensitive to pain ,
I am on tablets but they dont work and people who do not have this do not understand even family ( apart from my husband as he live's with it(me)
I dont work now and have to rely on my husband working ,i have always worked so i am finding it hard
could go on and on but at thispoint dont want to bore anyone :(
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