Confused

[seren1970]

When you were first diagnosed with fibromyalgia/Cfs was any one in denial,as I keep thinking I haven't got this its all in my mind xx

[Lou1064]

The more you learn about Fibromyalgia the more things fall in to place, you, like many of us have been on a confusing journey of symptoms that show no results in pathology or X-Ray etc which just adds to the confusion. Rest assured this is real and I'm sorry you have it. Lou xx

[TheAuthor]

No! I was in so much pain that I would have believed whatever I was told. I was diagnosed by a private consultant who worked with two other practitioners so I knew that they had discussed all of this thoroughly. I did think prior to my diagnosis that I may have had MS like my wife.

All my hopes and dreams for you

Ken

[stumpedok]

Hi Seren . ...I don't know how long ago you were diagnosed and therefore how long you have been feeling this way but I can relate to 'denial'. I was told I had Fibro back in the 90s and it freaked me out so much I went into total and utter denial. .....resulting in more years of chaos and upset until I finally asked for a recheck and it was re confirmed.

My denial was rooted in sheer fear of what such a diagnosis would likely mean for my life. I look back in despair now at what I did and how hard I made life for myself but what's done is done.

I'm wondering what is leading you to think it is 'all in your mind'? Its such a confusing illness with its numerous symptoms and the way it waxes and wanes but sadly it is all too real.

PS congratulations on coming off your meds as discussed in another of your posts. All best.

[clare_hart]

My denial, which waxes and wanes, comes 1) from my doctors who can't seem to get it together to come to a conclusion - which I believe is their ignorance and professional disregard. It makes me feel like maybe I'm hypochondriac, but I know I'm not. 2) From myself on those good days that I find myself slippping into this low self-esteem and doubting myself.

Now my new GP is sending me to a rheumotologist, but I am pretty certain I don't have RA. Maybe he can clear up the mystery (their myatery, not mine) . . . I have such a cynical view of doctors since my FM has worsened. I just don't think there is any other collection of symptoms that fits any other diagnosis.

[Hartleyhare2]

No not for me. I think I had kept putting off going to the Drs because of the consequences as I had self diagnosed after Webb research. Then the GP and Rhumetologist confirming and diagnosing Fibro. So much pain and exhaustion to get a piece of paper for the DWP. But I guess on good days I am in denial because I always over do it and end up bed bound for a couple of days!

[Regnofibro1]

Nope sorry I was diagnosed so long ago that the first time they didn't even have a name yet. I agree with Ken I was relieved to hear that it was not MS. I was just a kid so I knew what MS was. My aunt had that and I saw what it was doing to her! My advice would be to educate yourself and I hope that helps.

[caralbarry]

Hi seren. I've been diagnosed for 4 months now and I still try and kid myself it's not happening to me. Like you, I work full time, I also have 2 kids and a home to run (although I'm lucky that I can afford a lot of help- I certainly couldn't work full time otherwise). I'm trying to get through this drug free for as long as I can after going cold turkey on tramadol and codeine (only concession is 10 mg citalopram every other day) and its hard! Good days, bad days - I never know what I'm going to get. I can be fine one day and then unable to get out of bed the next. Fortunately I don't have any other major health issues ( and I feel v blessed this is the case ESP when I read posts on this forum and the brave souls who not only have fibro but other horrible health issues as well) but as ken says, this disease is real, it's not in your head and learning how to pace yourself and understand your body will only help! For me, reformer pilates has been a god send as have some fairly hardcore vitamin and mineral supplements, but I still struggle to accept that I can't be cured or it will get worse (occasional glimpses of fibro fog are showing and it's terrifying me tbh but thats another post....). Hang in there, there's support here and you will find your own coping strategies slowly but surely (I'm not very good at the slowly bit but but am having to learn!!). Best of luck x

[Merrrm]

I get you completely. I suspect most of us want some wonder test that will absolutely irrefutably conclusively PROVE to us and the rest of the doubters (Drs.......not just the rest of us lesser mortals!!)....that we do have Fibromyalgia!.

So having periods of denial are not surprising really. ..if the Drs don't all believe it and of those who do, there are some who downplay (even trivialise) it.

No wonder it takes so long to be diagnosed.

But its a beautiful sunny morning here ...my electric blankets been on for an hour to warm me up so I can finally get moving and I am going to the beach today!! Whoop whoop xx

[Telynores]

I didn't accept how limited I was by fibro for years hence went through the cycle of 'overdoing' causing pain/lack of sleep on a daily basis. It was only when my daughter permanently left home, we decided that I could no longer look after the dogs and horses consistently so they moved with her After that I realised how limited my life had become, I grieved for my old way of life and accepted changes which enabled a reasonable quality of life. I absolutely hate it but I accept it, if that makes sense.

[seren1970]

Thanks everyone xx

[ToyIla]

i think everyone goes through a phase of denial when they're first diagnosed with anything (FMA or otherwise) some people get through that really quickly and others take a lot longer. I seem to be rooted in this rather awkward phase where I don't deny I have it, but there's this stubborn little part of my brain which keeps going 'what do you mean you're in pain, just shut up and keep going, you're 28 for pete's sake'. If only I could shut that voice up, I would be able to pace myself better lol.

[lb003 in reply to ToyIla]

Would you say "shut up and keep going to" to a fellow fibro sufferer? I bet you wouldn't, so try not to say it to yourself, instead try saying what you would say to them.. it can help

[seren1970]

I totally get that I say that to myself everyday weird how our brains work xx

[seren1970]

I was diagnosed about 2 months ago it is sort of sinking in I have had to come home now and rest been working since 7am and my legs are so achey xx

[Midori]

Denial? Definitely. I couldn't believe that I had just retired,with plans to go travelling to see parts of the world I hadn't yet seen, and my health had collapsed in a big heap! I felt so cheated by life, and even now, several years down the line, I'm still in mourning for my previously active lifestyle.

[seren1970 in reply to Midori]

I no I'm getting married next year really worried I will be in pain all day and worst of all tired xx

[joannie1964]

Your post resonated with me. Think I'm still in denial although fibro only diagnosed in April, ME/CFS in 2010, But I'm not in denial about having it just about losing my life and dreams to its limitations. On reflection I think I have had this since my 20's not 51 and had awful depression, which runs in my family. But everything was 'depression' so it was never properly diagnosed. Back in the 80's ME/CFS was called the 'yuppie flu' and not taken seriously (still is not for some). So yes I understand what you are saying. Now I'm trying to find ways to make adjustments to my life and still have some 'fun'. Not winning yet tho!

Hugs

Jo x

[Keeleybee]

Hi seren, oh yes completely go into denial! One minute I can be fine and want to plan loads of things and even have another child then the pain kicks in and exhaustion and I'm back to feeling sorry for myself and looking at mobility scooters for the future - it's horrible and like someone is messing with our mind's! Very cruel.

I'm even considering paying to see another rhumy to just confirm its Fibro...

Big hugs x

[seren1970]

I'm sorry to hear your thinking of mobility scooter you look so young xx

[Keeleybee in reply to seren1970]

We're officially best friends lol I'm 30 feel 80 most of the time lol the scooter googling was when I was going though a hardtime with walking think I was having a very bad flare.

Have you suffered for long? I'm coming up to three year's now x

[seren1970 in reply to Keeleybee]

Well I'm 45 AND I'VE ALWAYS SUFFERED WITH PAIN BUT THE LAST COUPLE OF YEARS HAVE BEEN AWFUL MY ANKLES AND LEGS ARE SO PAINFUL NOT LONG HAD INJECTIONS FOR MY BACK WHICH I HAVE EVERY 6 MONTHS AND IT DOES HELP THE TIREDNESS IS WHAT KILLS ME XX

[Keeleybee in reply to seren1970]

Do you feel tired all day long? Mine really kicks in come 4pm pain seems to really get intense come evening around about now x

[seren1970 in reply to Keeleybee]

Most of the day but really hits me about 1pm xx

[Hidden]

I have had this illness building up for many years, so when they gave me the diagnosis all i felt was relief. It all added up and unlike other illnesses that i have had it wasnt going to kill me.

On the other hand ,even though its been 4 yrs since diagnosis i still find myself thinking that i will do that job, or whatever else when i am better.

Then i remember that i will not get better and thats sad. I Think that its more out of habit than denial. All those years when i did have good days and bad days.

[seren1970 in reply to Hidden]

When I was first told I felt relief that it wasn't all in my mind then I keep getting this little voice there's nothing wrong with you pull your self together silly really cause deep down I no I have I just don't want it its silly I no xx

[Hidden in reply to seren1970]

Its not silly at all i think that it is something that we all go through on a regular basis.

i often find myself thinking that i dont want this any more and that its time to do something about it.

What i dont know and that i find frustrating.

[seren1970 in reply to Hidden]

I no that feeling it's like today I've got a quiet day with work and I'm taking it easy but I feel I should be doing something x

[stumpedok]

Hi Seren ...I read in one if your earlier posts that you have "always suffered from pain" but only been diagnosed 2 months ago with Fibro. Like you I have a long long history of musculoskeletal pain.....I'm wondering what the medics put yours down to in the years before Fibro diagnosis?

[seren1970 in reply to stumpedok]

I also have Cfs.they said it was ibs and back pain x

[Hidden]

I was diagnosed with RSL, IBS and other side illneseses and although my GP at the time suspected that they were all connected didnt put 2 and 2 together.

That i do not blame him for. Pain is usually the main symptom and i only had pain when i had been in contact with some one who had a virus, they had a cold i had painful muscles.In fact i dont think that i even mentioned it.

[seren1970]

Whats rls?

[Hidden]

Restless Leg Syndrome.They think that it is caused by a chemical imbalance. The symptoms are a nasty, wriggly, Itchy, buzzing sensation under your skin.

I have been up and walking around the house since 5am. In the bath out the bath tried lying down doesnt work. so more walking and more baths.

It finally settled about half an hour ago and so i can finally sit without wanting to scream

As for the baths. they do usually work but not last night, I am getting really worried about getting waterlogged.

Gp raised my meds on wed so hopefully when they build up in my body ill get some sleep