do i have this condition and does it help to know?

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do i have this condition and does it help to know?

Postby mummyzz » Fri Mar 08, 2013 9:14 am

For years now i have been struggling with pain. Its very frustrating, but i have just got on with my life and tried to ignore it. Passing it off as normal, something i cant really help. But the other night i thought i would type into google "why am i always in pain" and it came up with fibromyalgia again and again. So I read about it and it certainly matches my symptoms. It certainly would explain a lot of things that i have been through for quite a while.

I have two questions though:

1. How do i know it is this?
I mean often you have symptoms that match things but it doesnt necessarily mean you have it. I dont want to go to a doctor saying i think i have this if actually im just being a wuss and its nothing that isnt normal in life. I mean how do you know what everyone else feels like every day. How much pain is normal.

2.Does it really help to know?
when there is no cure and not even really many drugs to help. My doctor will prob not believe me as will no-one else. I even feel silly suggesting it. It feels like im just being a wimp and should just get on with it.
But on the other hand its kinda interesing and comforting to know in some ways that maybe i havent just been imagining things all this time and winging about nothing which is how i feel and am made to feel. But its also kinda depressing knowing it might not be going to go away. Im fed up of pain and to think of having it for the rest of my life is not really something i want to think about.

If i do have it, are there really things that help? Or is it just a case of dealing with it as i have been doing? I sometimes wonder what i did to deserve this. Must have done something really bad in my last life.

Thought talking to people on here might be a good way to start...heres hoping
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Re: do i have this condition and does it help to know?

Postby tiny229 » Fri Mar 08, 2013 9:34 am

ask your doctor to send you to see a rhematologist ....he will examine you and give you a diagnosis and advice on any help ......theres no miracle cure but does help to know just what is wrong with you and to have someone actually take notice ...good luck
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Re: do i have this condition and does it help to know?

Postby loopy2302 » Fri Mar 08, 2013 9:54 am

Hi,
I think it does help to know what you have. Like you say you think you're just being a wuss and imagining all the pain you're feeling.
FMS is very real i'm afraid. :( But knowing about the condition and what to expect from it helps with acceptance of it too.
When i was first diagnosed i thought i was just being fobbed off. mine developed during my first pregnancy and after i contracted mrsa having my gall bladder removed just after my daughter was born. I was seen by numerous rheumatologists and neuralogists, had more blood taken than they left me with and this is the conclusion they came to. i had a hard job accepting it, i almost wished it was something much more serious so at least there was a cure :crazy:
sometimes i still feel like any problem i have is out down to fms( a recent kidney infection for example!)
Go to your GP, explain everything. There is alot more understanding and recognition of this now than even a couple of years ago.
It's hard to diagnose because the signs and symptoms are so far reaching and i don't think one single sufferer of fms has exactly the same symptoms as another!
There was a recent 'news flash' about fms perhaps being an immunosuppressed illness aswell as perhaps neurological and progress is being made all the time within research.
You never know, by the time your GP decides its fms there may be a cure!!!
Good luck. :-D
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Re: do i have this condition and does it help to know?

Postby LouLou » Fri Mar 08, 2013 11:00 am

Hi mummyzz

I'm sorry you are suffering with this like we are. I started showing symptoms about a year and a half before I was diagnosed with FM. The problem with FM is that there isn't one specific test for it. GP's tend to test for everything else as FM symptoms can be very similar to other illnesses so they like to rule out everything else. There is something called the "Tender Point" test where a Rheumatologist will test certain parts of your body to see how sensitive they are to pain. Again this test isn't done on everyone, it depends on your GP.

mummyzz wrote:1. How do i know it is this?
I mean often you have symptoms that match things but it doesnt necessarily mean you have it. I dont want to go to a doctor saying i think i have this if actually im just being a wuss and its nothing that isnt normal in life. I mean how do you know what everyone else feels like every day. How much pain is normal.


I had never heard of FM before. I just knew I was in pain all the time, I was constantly tired even after getting some sleep and I knew that it wasn't normal to hurt the way I did all the time. I started off seeing my GP who then kicked off lots of tests on me, xrays, blood tests, MRI's etc etc. Then I was referred to a Rheumatologist who then diagnosed FM. When I looked it up it all connected and something clicked for me. Most of us on here have had our diagnosis through a Rheumatologist so maybe seeyour GP and ask if he can refer you to a specialist. This is your body and your life and you know what feels normal and what doesn't. If you are concerned then push your GP.

mummyzz wrote:2.Does it really help to know?


For the year and bit before I knew what I had I was constantly frustrated with myself, my body, GP's the whole world lol. I just wanted to know what was wrong. I often felt like I was making it up or imagining things. When I heard it was FM I did some research and I was devastated at first as there is no cure. I cried non stop for a week but part of me was also relieved to finally have a name for what was wrong with me. It does take a while to come to terms with FM but once you know what you are dealing with, I think it's a bit easier to try and do things to help yourself.

There are a wide range of painkillers out there lol most of us are on a cocktail of them to help the pain. The painkillers don't completely take the pain away but they do help you to function a bit better.

There are also a number of therapies you can try - physio, massage, pain clinics, hydro therapy etc. What works for one person doesn't always work for another, it's just about finding what works for you.

There is a section on here called "Help/Tips with coping" Have a look there as there are so many wonderful tips on there to try. Even though you don't have an actual diagnosis yet, you still suffer chronic pain and those tips may help you.

Sorry to waffle on lol I hope that helps you in some way.

Lou
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Re: do i have this condition and does it help to know?

Postby FluppyPuffy » Fri Mar 08, 2013 3:08 pm

:cow-wave: :cow-wave: and :welcome: mummyzz, I'm sorry to hear what you've been trying to deal with over the past few years. Quite a few of us have gone thru a similar thing before eventually being dx'd.

I hope you'll appreciate that we can't say if you have FM or any other illness/condition. The only way to definitely find out what is behind your various symptoms and problems is to have things investigated and ultimately dx'd by a suitable medical/healthcare professional. Certainly on here, no~one would consider you a wuss as we understand what it is like to live with chronic pain and things. We tend not to say that we know what everyone else feels like each day, instead, knowing how we feel ourselves, means we understand what someone else is going thru when they say they are having a similar problem to what we may have had ourselves. As for how much pain is normal......................we'd need to define what normal means when it comes to something like FM, which would probably involve things like which came first, the chicken, the egg or the piece of string :crazy: :crazy: :crazy: :crazy:

To start things off for finding out what is the reason for your various problems, you need to go back to your GP. To help things, make some notes about the sort of things you experience, when they happen, how they feel etc. Using a scale from 0 to 10 for levels of pain can help with describing the intensity things reach. Also take some info about FM with you and use your notes about symptoms to help explain why you think FM could be the reason behind them. Hopefully, from there it will start things off on the dx~ing route, which could be done either by your GP or a suitable specialist.

WRT to it helping to know, that all depends on the individual. For most,knowing that there is a name for what is being experienced makes a huge difference as it brings things all together for them instead of trying to deal with a lot of apparently random symptoms. Plus, having a name to search for when trying to find out info helps make it a bit easier than looking for individual problems.

As for whether things help, that again comes down to the individual as we all react/respond so differently to meds, treatments etc. As LouLou has said, there is a range of meds that can help make a difference, as well as various treatments incl physio, hydrotherapy, massage.

Maybe have a look and a read across the boards whilst you decide what to do next, there may be some suggestions that you can try out to see if they make things a little easier for you.
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Re: do i have this condition and does it help to know?

Postby jennthefunkyranger » Fri Mar 08, 2013 10:02 pm

I know certainly it helps me knowing, even though it doesn't make the pain and tiredness, and everything else surrounding it any better, it means I know I'm not imagining it all, or going mad. It also means that I can get help for it, and assistance and allowances made at work, which wouldn't have happened before.
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Re: do i have this condition and does it help to know?

Postby mummyzz » Sat Mar 09, 2013 9:38 am

But i have two young children so its not like im going to get any help or let up anyway and im worried it is just an excuse to be lazy!
If i do have this i definately dont do myself any favours as i dont look after myself, work nights and get little sleep and never stop. Cant really see how i can change this either.
Hubby is unlikely to support me as he doesnt believe in being ill.

I might go and mention it to the doc, although i got to find the time to go.

Right now feeling very poorly with earache and flu like symptoms.

Life can be tough sometimes cant it?
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Re: do i have this condition and does it help to know?

Postby Caffycoffdrop » Sat Mar 09, 2013 11:22 pm

Hi mummyzz

Yes I agree life is very unfair!!

I was dxd with fibro 13 years ago. I was then dxd with MS two years later. I have only recently started accepting the diagnosis and by reading the various postings on this site I have found the acceptance easier. Fibro (and MS) is a tough condition to get to grips with and as other people have said, everyone is different. You just have to take each day as it comes, take the meds that your GP suggests and see how they work for you. Speak to him/her again if you feel that they are not working for you ask if there is another one that you can try. What works well for one person might not work for the next one. There are plenty of different medications that they can try you on.

From what I have seen on this site if you have any question or need clarification on anything, someone somewhere will be able to offer advice or reassurance until you can see your GP. There is generally someone awake at strange hours during the night and it is very comforting knowing that there is someone else looking at this site as well.

I think we are all rattling from the tablets together!!

Take care and I hope you find the answers to your questions.
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Re: do i have this condition and does it help to know?

Postby denys » Sun Mar 10, 2013 12:01 am

Sorry I picked up on one thing you said in your last post 'I'm worried its just an excuse to be lazy' it certainly isn't, if you have FM and you will need to speak to your GP to ask, they may be confident enough to diagnose themselves or they may refer to a rhuematologist.

You will find the time if the pain is bad enough, believe me I wish I could have my old life back, I like many others push and push to try to do things and the result is more pain which stops me in my tracks so lazy, no I dont think so :shock: :shock: :shock: :shock:
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Re: do i have this condition and does it help to know?

Postby mummyzz » Sun Mar 10, 2013 11:46 am

what i meant by that was that i have always managed to carry on so far, i dont want to feel that just because i know that i have an actual illness that i can just rest and not do stuff. I want to carry on doing as much as i can.

I guess right now i dont have it so bad, not reading some peoples stories. I am bad sometimes. and i do have pain most days, but on the whole i am able to carry on. I wish it would go away and i get really down about it sometimes, but i do manage to keep going.

I would like something to help manage the pain, and would like to know im not imaging it all but i dont want to feel that i should not keep pushing and making the best of things.

Its a hard thing to come to terms with isnt it?
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Re: do i have this condition and does it help to know?

Postby Caffycoffdrop » Sun Mar 10, 2013 3:35 pm

Hi mummyzz

I know what you mean about wanting to carry on as before. I am 'lucky' in that I was made redundant from what I found to be a very stressful job. I am now at home all day with my OH who has retired and we don't have children. I have managed to wean myself off a lot of the drugs and now keep them handy should I have a relapse from trying to do too much!! I don't want to feel that I am reliant on the medication every day, but it is good to know that I have them there.

I try to do a little bit of housework each day, not much, either dusting or hoovering. I work for about 15 minutes and then have a sit down and cup of tea for 30 minutes. And then do another 10/15 minutes. The rest of the house can wait. I am looking forward to the spring when I can get into the garden, but I know I am bound to overdo things again and end up back on the stronger drugs! It is just trying to stop before it is too late!

Good luck at finding the amount you can do without upsetting your limit.

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Keep a smile upon your face, you will find that life is cheerful.

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Re: do i have this condition and does it help to know?

Postby Patched » Sun Mar 10, 2013 4:46 pm

Hi Mummyzz.
Personally speaking I think it does help in knowing & having a diagnosis. I was diagnosed with FM a few months ago after having symptoms for umpteen years. Since diagnosis I have revieved a better quality of medical care & treatment that is more focussed on FM as a whole package, rather than each of the individual symptoms as they arose. I'd previously had blood tests, x-rays, MRI's etc which showed nothing abnormal, and so going back to my GP and requesting that he refer me to a rheumatologist was a very daunting prospect. I expected him to send me packing for being a wuss, but he was actually very empathetic & referred me to a rheumatologist.
Prior to diagnosis I kept trying to push myself as hard as I could,physically & mentally, thinking that I'd eventually improve. Now I know that this was the wrong way to go & it would always end up with me feeling even more exhausted,fatigued & in more pain. I'm now learning with supervision from a physiotherapist how not to overdo things & pace myself.
I would suggest you make that appointment with your GP & don't automatically assume he will treat you as a wuss. You might be surprised. However, if the GP isn't as sympathetic as hoped, then ask to see another GP or ask to be referred to a rheumatologist. If you have been treated by your GP for your chronic pain s/he will be able to look at your medical notes and history & see the logic in your reasoning.

There's often good advice & support on this site from fellow members mummyzz, and particularly the advice of the forum's moderators.
You have nothing to lose by seeing your GP. Good luck :-)
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Re: do i have this condition and does it help to know?

Postby FluppyPuffy » Sun Mar 10, 2013 6:12 pm

Mummyzz, if one of your little ones was poorly, you'd make sure you could get them to see a doctor to find out what was wrong with them. It's the same with you, you need to make that time and get an appt for yourself. Is there anyone who could either look after the little ones while you go, or go with you and stay with the little ones in the waiting area while you go in and see your GP to talk about things. If it does turn out to be FM and depending on how you are affected, you could find that something as simple as some slightly stronger pain meds to what you currently have could mean you're able to carry on pretty much as you are.

Just because you may find out you have an illness/condition, that doesn't mean you don't have to stop doing things, you may need to adjust how you do things and for how long you do them, but you can find alternative ways to do what you need and want to. And this isn't something that I'm just repeating what has been previously said, it's something I have gone thru myself. My son was a toddler when things started emerging and affecting me. I had all sorts of thoughts and worries about the sort of mum I would be as I couldn't do all the things I saw other mums doing with their children, but over time we found our own ways to manage things as they came up. He's now a teenager and from all accounts a typical one, so I don't think things have turned out quite as badly as I feared they might have.

If you don't find out the reason for how you feel, as time passes and things potentially worsen/intensify, it could become something that you regret not looking into, esp if you find yourself being able to do less and less and then discover that there was something that helped make you feel so much better.

Ultimately the decision about what to do can only come from one place...........YOU!! We can share our experiences with you and make suggestions, but we can't and won't tell you what you should be doing. Whatever you decide to do, I hope it is best decision for you and you can carry on doing all what you need to do.
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Re: do i have this condition and does it help to know?

Postby littleskibz1 » Mon Mar 11, 2013 8:15 pm

Sorry. I am going to throw a spanner i the works here.
I was recently diagnosed and wish that I had just let things lie.
Previously, although people thought I was lazy when I suddenly couldn't do something or thought that I was attention seeking, people treated me the same. Now, I have been told that I am not allowed to continue football, dancing. I've been told that I shouldn't compete in karate at a high level and am welcome to use the disability lift at college. No matter how much I wish it, there is no effective medication which does not affect asthma and the week I found out that I would have to learn to live in pain was the most depressing of my life. All I want is to be treated the same and that does not seem to be possible anymore. This is one condition which seemed to get worse when it had a name, simply because of the protection I now get. Depression and paranoia are common but as I am more depressed from the diagnosis, the symptoms seem heightened and my grades are suffering for it.

However, I reckon that you would be best getting a diagnosis just so that you know it is not something else. I had symptoms as a young child which have developed and had five years between the first appointment and the decision, and was told many times by specialists that there was nothing wrong. I know my family are happier now they know it is not life threatening (as am I) and most are coming to grips with it.

I am sorry to put a downer on things but this is me being honest. Good luck
Abbie xx
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Re: do i have this condition and does it help to know?

Postby FluppyPuffy » Mon Mar 11, 2013 8:43 pm

No need to think you're putting a downer on this Abbie or that you're throwing a spanner into the works. We each have our own ways of dealing with things, for some knowing what it is called helps them tackle it, for others knowing what it is makes things more difficult to manage.

I can more than understand why you're getting wrapped up in more and more cotton wool, esp from your parents.....it's something that gets switched on as soon as we have you offsprings in our life, it's an unconditional force of nature that makes us need to protect you from the horridness there is in the world, even when you're older and out there, experiencing the horridness yourself.
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