Denial ?

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Denial ?

Postby shoshanna51 » Fri Feb 08, 2013 3:14 pm

Hi,
Read another post about the stages of grief we go through when being diagnosed with FM. I am definately in denial at the moment.

I went to see a doctor, not my usual GP, because I had a pain in my sternum at the bottom which ached but was also really painful to touch, I'd had it for about 12 weeks or so and was trying to ignore it. Anyway he said it was Costochondritis and gave me paracetamol & codeine. I went away relieved that it was not in my head ( I am bad for this because I have so many aches and pains, this was before knowing I had FM by the way ) and then spent a while looking it up on internet to find causes.
One of the causes is FM, so I looked that up as had never heard of it. When I read all the symptoms etc it was like reading all about me and all things wrong with me.
Anyway had to go and see my normal GP so I plucked up courage to mention FM to him and to ask did he think it might be what I had ( I know they hate you telling them whats wrong with you , but I was careful how I worded it and was also open to that this might not be what was wrong with me ). He stood me up and did all the pressing of the trigger points, he found a couple I did not even know I had till he pressed and I nearly hit ceiling with pain ! and said that I fit the criteria with regard to the trigger?tender points.
He then chatted a bit to me about it all. said he would arrange blood tests, and physiotherapy (have 1st app next week ).

I am now thinking to myself, was he just humouring me because I am one of those people who he sees regularly. Did he agree just to shut me up and stop me seeing him so much. How could he really say it was FM just from pressing a few bits on my body ??????
Is this denial I am in ?, I keep telling myself it's just aches and pains from age and menopause etc etc, that I am an hypochondriac, that the pain in my hip is sciatica. You name it I am telling myself that that is whats wrong. I couldn't possibly have FM !!

I have thought about applying for DLA, but how can I when I don't look disabled or when after being up for a couple of hours my aches lessen (they return usually in the evening when I have sat still for a while). Lots of people struggle to lift their legs to get in shower or bath, struggle with the stairs, find getting their socks and shoes on hard as they can't bend. Isn't that normal at my age (52).............. It makes me feel a fraud when so many people genuinely are disabled and can't get it.

My husband is disabled, he lost his right arm in an accident, he only gets lower rate care DLA, he can't have the mobility component as he has legs that work !!, so he can't get a blue badge for his car, even though having 1 arm means he can't carry very much, very far. God it makes me so angry grrrrrrrr

How do I know for sure I have FM ? I don't want to waste NHS resources or time......................
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Re: Denial ?

Postby moomoos » Fri Feb 08, 2013 3:55 pm

Hi Shoshanna

You remind me of me with what you have written here. I'll tell you a bit of my story.... I started getting hot flushes way back in the end of 2011 and I thought to myself.... oh noooo here comes the menopause! I had just gone 49 at that time and thought the age kinda fitted too, so I thought... well no need for panic, its normal, so I just got on with it and only mentioned the hot flushes in passing to my doc and he offered blood tests but I refused cos I'm blood phobic and avoid anything to do with it like the plague. Soon after I started getting terrible pain in my left shoulder and I couldnt move it or lift or carry anything so I went to the doc and he sent me off for a x-ray, which showed up nothing, so I just ignored it after that and thought I must have pulled it or something? I started getting lots of aches and pains during the spring of 2012 but I just put it down to the menopause and I just carried on thinking to myself that every ache n pain n every hot flush takes me closer to the end of the menopause and I just grinned and bore it. During Summer I noticed the pain got less but that thru all this time I had had restless legs every single day all day long with no let-up from it at all, it even woke me out of my sleep, along with other pains in my body too. By September/October of 2012 I had gone so far down-hill with the pain all over my body I was like a totally different person and I had to tell the doc as I just couldnt cope with it any longer without saying anything. I had also changed docs in the Spring of 2012 as my last one just didnt listen to me about anything I ever went to him about. My new docs are very good and act very quickly. They did a lot of blood tests on me to rule out everything they normally test for before FM is diagnosed. Everything came back clear. I didnt actually know what they were testing for and that the end result would be FM if all else was clear. But I was actually called at home asking me to go in to have a chat with the doc, so I did and she told me I have FM, that was I think on the 20/21 Dec 2012, nice Xmas present!! She told me to go home and get my head around it and she gave me info to read and a list of drugs that can be used to help with pain, and to have a read about em and go back and tell her if I want any and which ones I want etc etc etc.

But like you I thought to myself ..... how can she really know???? and....... do I really have this FM?????...... Am I making it all up in my own mind????? ......... but then I could feel the constant pain and knew I couldnt make that up!!!! and I can feel that I cant do much anymore and every day is a struggle and is not getting any better at the moment and so she must be right, I do have FM cos like you, when I read all the symptoms of FM it was like someone had been writing specifically about me as I have most of the symptoms on the long list. But all that time for a year I had suffered so much and was going along thinking it was all menopause related!!!!!!! i feel like such a fool!!! My hormone levels are perfect, I'm not in the menopause and actually have all that to come :(

So I can understand how you are feeling. I still havnt got my head around having FM, nowhere near as its all new to me even tho I have been in pain for all that time. Also I have not put in a claim for DLA yet even tho I probably could do with it because I think .... am i really entitled to it? and also I see the battles these other poor people on this site, and many others elsewhere, go thru to get it as well and it scares and exhausts me even before I begin. I dont know what to do either?????

Hope youre kinda ok... :hugs: xx
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Re: Denial ?

Postby shoshanna51 » Fri Feb 08, 2013 8:04 pm

Thank you Moomoo's for your reply.
I was told I had FM just before christmas last year too !.
I am defo in middle of menopause but on HRT which has stopped the hot flushes and mood swings for which I am thankful. I am also B12 deficient and have injections every 10-12 weeks, I had actually begged to have them more frequently because I still felt so tired even after having one, I now know that that is prob the FM doing it as blood tests showed my B12 levels were good on the injections.
I have Diverticular disease too ( I feel a mess I can tell you ) but all the problems I have with that part of me prob partly due due FM too. Some days I can go many times with the runs.......very hard if I have to go out anywhere.
I suffer muscle weakness and terrible cramps in all sorts of places, legs, back, rib cage, toes and fingers. I get prickly skin and what I call nesh skin which is when I get really sore patches of skin that hurt to touch.
I get pains in all sorts of places including my face and jaw. I had to smile last GP visit as he suggested I lose weight, and whilst I agree I should and that it will prob help, I got impression he thought all this was due to extra strain on my muscles and joints hence the reason I think he is just fobbing me off as he fed up with my constant visits.
For some reason I would say 60% of my pain is on my left side but I do get pain on my right too ( I don't think this is characteristic of FM though )
Have spent ages trying to work out when all this started and what might of set it off and I think it was in the last year of running our pub 2010 as we were under such terrible stress at the time. It did seem to get better after we had left but then things have happened in last year that have been equally stressfull if not more so as I know there is no end to it for forseeable future.
Anyway I may just get another opinion from another GP in our practice who has been ok in past, will have to think on that one as don't want to waste anymore of their valuable time when they will in all probability agree with first GP.
Hope you are not feeling too bad at moment, take care,
Susan
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Re: Denial ?

Postby Cozmicfairy » Fri Feb 08, 2013 10:32 pm

Hi Ladies,

I know i'm in denial at the moment!! I was diagnosed with FM about a week and a half ago. Not sure how many years I've been suffering with this pain. I had a car accident five and a half years ago at the age of 24, broke my back in 5 places and was left with spinal cord damage which means that I damaged the nerves to my bladder so I guess this was the trauma that probably kick-started it. I've been under the spinal injuries team who put my pains down to 'neuropathic pain'. I was referred to a rheumatologist back in September by my GP after walking into his office and literally having a breakdown because of all the pain I was in. My rheumatologist carried out all kinds of blood tests after listening to my 'complaints' as he thought I could have Raynauds and Lupus. 6 weeks later I was told that yes I do have Raynauds but none of the blood tests came back to indicate that I had the connective tissue disorder. I was put down as an inconclusive case and told to put Lupus to the back of my head and return in 6 months. I seemed to have been getting worse during November to January and I finally gave in and phoned the hospital to see if I could get in to see my Rheumatologist again as it was becoming unbearable. The pain was unreal and I was just sooooooo tired all the time. So a week and a half ago, I handed my consultant a piece of paper that summarised a typical 'bad' day for me. He took one look at it and said 'you have Fibromyalgia, have you heard of it??' I was handed a booklet, referred to physio and told to come back in 12 months time. I can't get my head around the fact that I'm stuck with this thing and there's nothing I can do about it. I'm currently trying to find out as much as I can about this thing as I seem to have tried every painkiller under the sun and I'm fed up of rattling. Hope I've not bored you too much - haha!! :-D
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Re: Denial ?

Postby Flash » Fri Feb 08, 2013 11:39 pm

I have had F/M for 18 years diagnosed 9 years ago. I also have osteo arthritis so when the pain got worse, I thought it was that. The numbness in both arms at night, the exhaustion, the sight disturbances and IBS made me question it. I had an idea after reading an american book and with help from a lady on a F/M and M/E forum, managed to list all my symptoms. it took 4 years to make my GP take me seriously and send me to a rheumatologist who is renowned for his no nonsense aproach.

I had glandular fever and a car accident just before all this kicked in. I slowly stopped running, cycling, canoeing, horse riding, I had to give up working in car body repair and valeting, next to go were my job in a play group and my post as a voluntary class assistant. I held on to a voluntary role in a complementary therapy centre until they decided to get rid of the lame duck last Autumn. I have brought up two lads alone and am used to doing everything myself.

Just recently, I have got someone in to do my garden as I now have to admit I am doing more harm than good by struggling on alone. I hate asking for help, always the one others came to... Past tense now, as I am surplus to requirements. :( :(

Still, my mind says I can do the things I want, like take the dog out over the fields, but my body says "NO!" It's just too much. I still carry on as I can't give in, I don't want to be reduced to doing small things... one step at a time... Pat myself on the back every time I do a small task... This isn't me!! :nono: :nono:
So now, my body has a way of dealing with the pain and exhaustion... If I do too much, I switch off like a light. Bang! out cold on the floor. When I come around, I can't talk properly and am out of sorts for a couple of days. It happened during a consultation when the neurologist put me through some tests. I was about to put my shoes on and went down like a ton of bricks. He said it's my bodies way of dealing with the pain when I don't stop.

We are told and will tell others to pace ourselves, split the days and rest often but realistically, how many of us do that? It doesn't help when someone asks what's wrong... I will tell them about the arthritis, the asthma, the prolapsed discs in my neck but I seem to stop there. I don't feel like others will aknowledge the F/M so keep quiet about it. :roll: :roll: :roll:

Ah, well, can't keep quiet here, Now you all know what I got and I know what you've got... No hiding now!!! :lol: :lol: :lol:
:hugs: :hugs: to you all.
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Re: Denial ?

Postby shoshanna51 » Sat Feb 09, 2013 1:48 pm

Thank you all of you for your replies. :-)
I find it quite hard to think there are so many of us out there with this and so many who do not tell people about it because of fear of ridicule. I too will say oh my back hurts or my hip is playing me up, basically say anything but I have FM and I'm having a bad day/week/month etc. :-x
One thing one of you said (sorry I can't remember your name) was about trouble with your eyes. I do wear glasses for distance and reading but some days I find I can't focus still and that I am really straining to see properly. I also get sore red rimmed eyes that feel dry and gritty and sting. Is this another of FM's little presents ??? I have never associated it with that.
At the moment I am toying with having my hair cut short in a style that requires very little attention as I am finding drying and straightening my bob so hard. Really makes my arms and shoulders ache. This grieves me as I like my hairstyle. Having got naturally curly ( well wavy now after 10 yrs of using straighteners ) I was so happy on the invention of straighteners, that at last I could have the straight hair I wanted (always the way, we want what we haven't got lol). To have to give it up because of this damn syndrome makes me angry :evil: . I know that must sound so petty when we have to give up so much more important things because of this but it's just another nail in the FM coffin.
Well that's my moan for the day ;-) . May we all have more good days than bad, roll on the summer and a bit of sunshine. Hugs to you all.
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Re: Denial ?

Postby Flash » Sat Feb 09, 2013 2:10 pm

I have worn glasses all my life, well, since they would stay on my fase anyway. But the F/M has caused problems. I have my eyes regularly checked and am using the propper strength glasses but my eyes still go blured sometimes. I keep taking my glasses off to check there is nothing on them. Often, I don't text with my mobile as I can't see what I'm writing. I email in larger print and use this site when my eyes are okay.

As for your hair, it's not petty at all, we all want to look as good as we can and our hair frames our face. If I'm having a bad hair day, I'm not happy going out. If it's important to you, how can it be petty. If you can't manage it now, have a look through some mags and pick out a few styles that you like and think you could manage. When your sure and feel like treating your self, go to a good hair stylist. Explain your restrictions and pick out the best one for you, from your list.

I think, this last year has taken a lot out of us and really hope for some dryer and sunnier weather in 2013. We need it!!

Take care and :hugs:
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Re: Denial ?

Postby moomoos » Sat Feb 09, 2013 3:44 pm

Hi, There are so many similarities with the things that are being mentioned on here to what I am feeling.

My eyes are also affected. I normally would have sight tests every two years and there might be a very slight difference in that time, but since FM has come I had to go after a year as I was straining to read with the glasses I had, I was having to hold things further away from me even with my glasses on. The optician said there was a considerable change in my sight in that one year. Now I am feeling the same thing again and its not even a year since my last test, so I know things are getting worse with my eyesight in that way. I also get red rimmed eyes.

Susan, I have the menopause all to come :yikes: that fills me with dread, as I already thought I had been over a year into it :cry: I suffer IBS and sometimes I cant be far away from a loo too, and also when out can be embarrassing when using public loos. I also have the weakness, cant open things like bottles of water just as an example, but hundreds of other things too. I also have the sore skin as well as the terrible pain of the rest of the body. I find soles of my feet absolutely 'kill' me, all day every day, with or without shoes, with or without walking on them, just so much pain, especially around the heels bit??? I would also say my left side is worse than my right.... in specific places like my shoulder, inside of my elbow, wrist........ but my right hip is worse than the left and both knees are just really terrible as before all this I had both cartilages torn from my athletic younger days!! I feel like an old cronk now !!!

Cozmic..... I was handed some info on FM by my GP and told to go get my head round it and decide what painkillers if any you wanna try. ~That was it, no physio or rheumy offered or anything, so I am going to go back once I have got thru some other health concerns that are going on at the moment and ask for more help. I hope you get sorted too..

Flash, crap aint it that we have to give up so much of what we used to do, used to be. I too have been on my own and very independent for years, n the kids are living independent lives now, and now this. Just at a time when it should be a bit of 'me' time, this comes along and kicks me up the backside, as if there hasnt been enuff crap along the way already!!! I dont like asking for help. I also feel a bit like you cos everyone would come to me when they needed help, but now that I need it they are nowhere to be seen. Lets you know who your real mates are/arent, and family too unfortunately!!! Theres a lot of selfish people around :(
My mind also says I can do loads, but the body says no. I cant even walk very far at all now without having to stop for rest because of the pain, its mainly in my knees, but at the backs of them...... I dont know if you get this or anyone, but I have like swellings at the backs of my knees. I think people have it without ~FM but mine seem to come right out, I know it wasnt there before FM anyway, its hard to explain what I mean, but youmight know if you have it, but my god is it painful and sometimes I just cant take another step the pain is so bad, plus the other bits of my legs hurting too. When I take the dogs out on the fields I usually wear my wellies but they feel too heavy for my legs these days I dont know if others feel that? Recently I'v not been able to go out with them poor things cos I'v had pneumonia and am still trying to get over it and on my third lot of abs at the moment. I find it hard to give in too Flash. Your thing is scary, just passing out like that :yikes:

Susan, I get you with the hair thing. I have very long hair now and it hurts me to do the drying with the hair dryer. I have straight hair so dont use straighteners but do sometimes use a 'wand' to curl my hair and it hurts to do it. I would say to you, keep yer long hair cos I find having a short style you have to keep up to it more than if its long, if you want to go out looking ok with the hair. With long hair you can just throw it up in a crocodile clip and it looks good, with short hair it has to be done properly otherwise it just looks awful, you might get away with it better as your hair is wavey, but with straight hair and a short style its harder to maintain. I'm keeping me long hair cos when i'm not going out i can just leave it to dry on its own and then put it up if i do need to go out.

Hope youre having a not too bad day all :grouphug: xx
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Re: Denial ?

Postby shoshanna51 » Sat Feb 09, 2013 6:37 pm

Moomoo's,
re the eye thing. I am exactly the same. I had a sight test in Feb last year, about 6 months after my last one as I found my glasses were not working as before and the optician said there had been quite a marked change in my prescription and said it was very unusual, we put it down to stress (god I hate that word as have blamed it for so many of my problems !).
Now a year later I can tell I need new glasses again and have had to start wearing my distance ones too, which although I have had for years have got by without using them often at all.
I have been putting it off for quite a while but can see another sight test is needed. Deep joy :banghead:
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