Denial?

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Denial?

Postby evie15 » Sat Feb 23, 2013 5:10 pm

Hello. I am new here but was diagnosed with fibro two years ago.

I don't know if I am still in denial or being stupid or silly or what!!

It's a bit of a long story, I'll try to cut it down.

So about 2004 I injured my spine and had all number of tests done, mri, bone scans and x rays. Not too much was found but a fracture on one of the discs and an aged and worn spine.

I then got referred to the pain clinic because my pain was continuing and getting worse. I had faecet joint injections which also made the pain worse.

In 2009 I had a terrible kidney infection, I was so weak I couldn't walk and passed out in the bathroom. After that I felt my legs were not recovering and I constantly felt soooooo tired and fatigued, I couldn't get dressed and was always distracted. I would forget I was getting dressed or showered etc. I went back to my GP, I was convinced I had lymphoma actually. I had never felt so worn out and I was a very active and fit person my whole life.

I have had many blood tests, one with a positive ANA and another with elevated CRP levels. My fatigue has gotten worse and worse to the point now everything exhausts me, even writing this has left me dizzy and exhausted and taken me ages to write. I used to be an avid reader of the classics such as Dickens and now I cannot read a paragraph in the paper about something silly without loosing my place and getting confused.

I have had accidental fires in my kitchen where I have forgotten there was food on the oven and left keys in locks.

I have a thousand symptoms, could go on all day, IBS and I get a severe burning on my forearms and legs like I have been burnt with a candle and I cannot let cloth touch it.

I have pain in my shoulders and arms, my legs ache all day everyday and feel like lead. I am nothing like I used to be and I hate myself for it.I am so dizzy I nearly fall all the time and my head swims like I am underwater. My knee is currently swollen with a watery bump and I have just had three constsnt weeks of a severely bad leg where the pain went all the way to my foot.
I am quite slim and my BP is perfect (about the only thing I do not have is high BP!)

I was referred to a rhummy in 2011 who diagnosed fibro, gave me a leaflet and that was about it. I have been re-referred this Jan to another rhummy and saw him this week. he examined me and I was shocked the loss of strength I have lost in my legs since even last summer, I have been having a really bad time lately, I never seem to have good days, haven't had one this year yet and cannot remember one last year either. This I think is why I feel it is not Fibro, my condition isn't variable that much and seems constantly bad and worsening to me and people around me.

The rhummy asked me why I feel it isn't fibro and I don't know, I just feel it, or maybe it's me wishing it wasn't. He suggested blood tests which I have had done but when I asked for an X ray or something he said there was no need, even though it's been about seven years. I was crying and came out in floods, the poor nurse was so lovely though.
Something in me thinks, maybe I have something else except fibro.

I don't know, maybe it's me.

Thanks for reading, if you got through that you deserve a medal, I couldn't read all that!!!
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Re: Denial?

Postby Beccie42 » Sat Feb 23, 2013 5:41 pm

I don't think you are in denial, but it is very easy to be. It does sound like fibro to me, however there are a lot of other conditions that have similar symptoms. There is no test for fibro, its just a case of ruling out everything else. Quite a few people will say their symptoms came on after something else, such as flu or another condition such as arthritis. I had really bad swine flu in 2008 and I don't feel like I have ever recovered from it. I've also been diagnosed with a type of arthritis (PsA) as well as fibro. The saying 'it never rains but it pours' always seems to be true.

But don't let it get the best of you. Take the bull by the horns, take things easy and make sure you have regular checkups with rhumy dept. Some are better than others but hang in there. Quite a lot of people find that taking Vit D supplements help, but you need to take double the RDA for at least 2-3 months before seeing an improvement. Try and find ways of coping, such as writing things down and putting post its everywhere to cope with the confusion.

Its ever easy, but use this site to get answers and help. Read other peoples questions too as it all helps. I know its easier said than done sometimes but hang on in there.
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Re: Denial?

Postby shazq » Sat Feb 23, 2013 6:10 pm

Hi Evie

:grouphug: It`s normal to feel this way with fibro because it does not show up in any tests its like its not there but we all know only to well it is there, we are all living proof of it.

It is also normal to go downhill once getting your diagnoses, fibro is a debilitating condition. Everyone is affected differently some sufferers do have good spells where as others like myself are in pain 24/7.

Some people can live a "normal" life and control their pain by meds but others have to leave work and some are bed bound through pain, no two people are the same.

You will grieve and go through all the stages and want your old life back, you will have your up`s and downs as no one knows when we will be able to accept this but with meds we can try to live and carry on as best as we can.

Finding the right meds can make a big difference because if you can get your pain under control thats a big bonus. :-D

We have lots of info and support on here so you are not alone. :hugs: Any questions just ask.
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Re: Denial?

Postby spooks1970 » Sat Feb 23, 2013 6:19 pm

I'm so sorry you're suffering so much :(

I too think it sounds like FM but I'd request blood tests for Lymme Disease, Glandular Fever, Vitamin B12 ... There are more but I'm very foggy at the moment, sorry!! :? If all of the blood tests come back clear then it's even more likely to be FM. Chronic Fatigue Syndrome is becoming more widely excepted as another 'linked' FM illness like IBS etc

I've never had any scans or x-rays for FM but from what I can gather it would be pointless as FM doesn't actually make visible physiological changes. Arthritis, however, does!! Some of your symptoms maybe cross over ones, unless of course, you've had Arthritis ruled out!? I have both Osteo & Psoriatic Arthritis & my CRP is always high.

Regardless of anything I suggest I think you need to get back to your Dr asap. The newer FM meds can be beneficial so they're worth looking into if you aren't on them already!!

My Rheumatologist puts FM into 3 catargories.

1. Mild, pain is intermittent & fatigue usually isn't that bad.
2. Moderate, pain is often more intense & CFS is often more common.
3. Severe, Extreme pain that can be constant though it tends to come in waves, extreme CFS tends to show itself even more.

I get the 'lead legs' throughout my entire body at times, it's awful so I truly sympathize. I often wonder what on earth I've done wrong that I'm left in such pain. The one I find hardest to cope with is the burning thats bone deep, I find it impossible to take my mind off of it :(

I just hope you know that you aren't alone!! Self doubt is something many of us go through but I believe if the tender point test is positive along with the signs & symptoms being a minimum of 11 out of 18 (this may have changed now) then FM is very likely but it doesn't mean there aren't things worth ruling out.

Soft hugs.xxx
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Re: Denial?

Postby FluppyPuffy » Sat Feb 23, 2013 6:31 pm

I made it to the end of your post evie, instead of the medal tho, could I have a :teddy-bear: instead :bear-dancing: :bear-dancing:
evie15 wrote:I have been having a really bad time lately, I never seem to have good days, haven't had one this year yet and cannot remember one last year either. This I think is why I feel it is not Fibro, my condition isn't variable that much and seems constantly bad and worsening to me and people around me.

As I was reading thru things, the reason why you feel it may not be FM jumped out at me. I don't have any good days, everything is there and fighting for prominence all day and every day. I've notched up 13 years as a member of the FM club and can't remember the lasy time I had a good day or was symptom free. What I'm trying to waffle at you is, whilst some will have the "good days" there are some of us FM~ers who don't, and with what you've said here, it could be that you're another of us who have everything there and spiking all the time. Altho we all share a range of symptoms, FM affects us all so very differently, so whilst you may not fit with what you have found out about FM, it doesn't necessarily mean that you don't have it. What is more likely is that you have your version of FM, just as I have mine and Beccie, who posted above has her version of it.

Unfortunately there isn't a "one~size~fits~all" version of FM, what there is tho, is a condition that takes everything you knew as life, screws it up and chucks it in the bin, then shakes you about and dumps you on your head, then leaves you to find you way out thru the devastation and put things back together so you can start to live with the condition rather than battling against it.

Denial is one of the stages we tend to go thru as we slowly learn how to live with the new person that we slowly become as we find our way thru our FM~days. It's not unusual to go back and visit some of the stages we tend to go thru. Maybe this linky will help explain things a little more and help you find where along the road you are at the moment viewtopic.php?f=2&t=10653
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Re: Denial?

Postby millymoodoo » Sat Feb 23, 2013 7:18 pm

Quite a lot of people find that taking Vit D supplements help, but you need to take double the RDA for at least 2-3 months before seeing an improvement. Try and find ways of coping, such as writing things down and putting post its everywhere to cope with the confusion.

Please be careful when taking more than the normal dose of vitamin D!!! I have developed several large kidney stones due to takeing vitamin D and i have only been taking the normal dose!!! The other thing is i note you have had severe kidney infection therefor your kidneys have already taken a battering.

I too really struggle with severe fatigue to the point where if i have done something one day even if it is only for a couple of hours the following day i am confined to bed and sleep all day which makes me feel so lazy but i am so exhausted that i just cant function!!!!


Best wishes and :hugs:
Millyxxx :-)
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Re: Denial?

Postby evie15 » Sat Feb 23, 2013 8:10 pm

Thank you all so much for your lovely replies.

I just think it's the constant worsening and constant pain and fatigue just getting to me. This sounds awful but at one point I was hoping I had lymphoma as I felt like I could face the chemo if it meant eventually feeling better, as awful as that sounds! :oops:

I am gaining so much info from reading all the other threads and from the replies here. I have just ordered some vit D as the rhummy recommended it too. He has also referred me to a CFS specialist too.

Fluffypuffy, I am so sorry you haven't had a day without symptoms in so long. This is such a hard condition to live with everyday!

Spooks, I feel just the same and get so upset about 'why me?' and what did I do so wrong that landed me here. I would say I am number three on the list and it never seems to get milder. They seem to have ruled out arthritis but I'm not sure. My grandmother has terrible arthritis in her hip. Oh and the dr diagnosed her with fibro too a few years back with none of the tell tale symptoms just hip pain but that is arthritis, she has no other common or less common symptoms.

Thank you all for your great input.
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