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The UKFibromyalgia Forums • View topic - New to this and feeling very guilty



New to this and feeling very guilty

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New to this and feeling very guilty

Postby Wobbly woo » Mon Apr 21, 2014 8:05 pm

I was finally diagnosed with FMS in 2010 after years of joint pain and depression. I've tried various things over the years including drinking and self medicating,none with any joy. After being stuck in the middle of my parents very messy divorce, and verging on a nervous breakdown (i got to the point where i couldn't even face getting out of bed), I finally found a fab Gp (a locum at my practice) who referred me to a clinical psychologist and physiotherapist both of whom were fantastic. I had 12 months of CBT which was very emotionally draining and brought up some very upsetting memories,but helped me to realise why I felt the way I did about being ill and a burden to my family. I currently take amitriptyline 50mg , duloxetine 60mg , and 160mg of morphine daily. I get a horrible 'hangover' feeling from the amitriptyline but found its helped with the muscle twitching and pain.

My balance is really bad -I've had several falls,one of which resulted in me breaking and dislocating my ankle last summer,that meant plaster for six weeks,I couldn't use the crutches because of pain in my wrists and hands,so spent the majority of that time in a wheelchair totally dependant on my then 9 year old daughter,husband,mum and dad.

I feel so guilty for not being able to run about and play with our daughter,about the fact that I rely so much on my family, and that I can't have another child which we all desperately want. All I seem to do is complain about how bad I feel,snap at everyone and sleep. My life feels totally out of my control,although I do work part time I find it completely exhausting and have no energy left for anything else when I've finished.

I suppose I could do with some insight into whether anyone else has these symptoms -the dodgy balance,panic attacks,never ending 'toothache' type pain especially in my hips,headaches and tiredness? And any ideas on how to ease the symptoms other than the tonne of medication I take daily just to function.

Sorry it's an essay! :oops: :-? Thank you
Last edited by FluppyPuffy on Mon Apr 21, 2014 11:07 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: New to this and feeling very guilty

Postby Garyl » Mon Apr 21, 2014 8:34 pm

Woobly woo, do not ever feel guilty this is a awful illness. I have had it for a number of years and i am unsteady on my feet, have had a lot of falls, resulting in me needing a granny stroller.

I get the pains all over currently suffering with right elbow being in pain', as for sleep i learnt that lavender helps so bought a plugin with lavender scent and i am finding i sleep slightly better.

as i live alone i do not snap at people which is a good thing in some ways.

So yes i get the tired ness, unsteadiness and other things you mention. You just have to di best you can
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Re: New to this and feeling very guilty

Postby daddyvic » Mon Apr 21, 2014 8:45 pm

Hi, yes I suffer with the same. Balance is really bad but use crutches all the time as I also have arthritis, excessive bone growth and impingement of both hips.(I have just got a cheap mobility scooter so I can go out with my family). I do work full time but have had to take a demotion. Like you this leaves me with no energy to play with my children. But they know what I am going through and my wife is fantastic (she puts up with me :-D ). I have just about come to terms with it all and try to make the most of it as and when I can.
If you can come to terms with it in yourself it will feel less of a burden. (I know easy to say).
All the best.
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Re: New to this and feeling very guilty

Postby Wobbly woo » Mon Apr 21, 2014 8:57 pm

Thank you both :-D I think knowing that there are other people in the same boat,and some much worse, helps me to feel 'more normal' whatever that might be!! I'm concerned about the number of painkillers that I take, not sure it's a good thing,but recent tests came back clear so that's definitely a positive I should build on. Thanks again 8-)
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Re: New to this and feeling very guilty

Postby painprincess1 » Mon Apr 21, 2014 9:39 pm

Welcome to the family love,
Have u had the balance looked at.to make sure it's not your middle ears.
I'm sure like most have told you half the battle with fibro is
Learning to forgive yourself.learn that not everyone will understand or even care, and that at the end of the day if u can go to bed knowing you did your best that day then be proud of that.
You will always have days where you feel very down and the only ppl who get it are ppl in here.
I always think if we all liked I. The same town and we all didn't have fibro would we all still get along.
Because if nothing else this illness has made me friends I might not of had without it xxxxxx
smiles and the world smiles with you. cry and you cry alone.
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Re: New to this and feeling very guilty

Postby Wobbly woo » Mon Apr 21, 2014 9:51 pm

Hia,thank you :-D I've had my ears checked a lot-I suffered a lot of ear infections as a child, then as a teenager,swam a lot and stopped due to the onset of the dreaded pain when I had a fall at 19.

I developed really itchy ears a couple of years ago, I had a little scab in my right ear which I kept scratching in my sleep. It eventually ended up being a scabby mess-really attractive-not to mention painful. My tragus had swelled up along with all the right side if my face.
My Gp sent me for an MRI scan, which came back clear thank goodness.

After all that 'they' put it down to eczema which I now have in both ears and still flares up, especially at this time of year because a also have developed hey fever ?!

So I suffer frequent ear infections and my balance is just ridiculous!
I have read that persistent infections are also a common symptom of FMS ? Not sure how true that is.
Thanks again 8-) xxx
Last edited by FluppyPuffy on Mon Apr 21, 2014 11:08 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: New to this and feeling very guilty

Postby FluppyPuffy » Mon Apr 21, 2014 11:48 pm

:welcome: to our FibroFamily Wobbly :cow-wave: :cow-wave: :cow-wave:

I've moved you into here with this being your intro topic as it's a more suitable board. I've also made the paragraphs on your posts a bit clearer as quite a few of us on here struggle with reading what looks like a large block of text, another of those little delights that FM gives some of us :roll: :roll: :roll:

A lot of the things you have mentioned can be attributed to/associated with FM. Balance problems were the first things to appear for me, I've lost count of the number of times I've ended up on the floor or have gone down the stairs over the years :shock: :shock: :shock: The thing you have mentioned about developing itchy ears is something that has been mentioned previously too. The cause of it isn't known unfortunately, but for some it does seem to be another of those additional associated delights that FM lobs at us :facepalm: :facepalm: :facepalm: It's not unusual to find that anxiety, depression, panic attacks also appear in the mix too, all adding to that out~of~control aspect.

The guilt really seems to hit us hardest where our offspring are concerned. I think most of us have felt like the worst examples of being a parent at some point along the way :facepalm: :facepalm: :facepalm: I know I have, and still do at times, even tho my offspring is now almost an adult. So long as your daughter knows how much you love her, and she is generally a happy, typical 9 year old, there's a good chance she'll become a decent, well rounded and loving person as she grows up :blowkiss: :blowkiss: :blowkiss: :blowkiss:

Wrt to doing things with her, altho can't run around with her, there are still enjoyable things you can do together that will give you some girlie time together without taxing you too much. Sitting down somewhere comfy and making something together, painting nails, or whatever other fun things you come up with, will probably mean far more to and stay with her for a lot longer than thoughts that you weren't able to run around with her.

There is lots of info and advice across the boards, so when you get a chance, have a bit of a looky at what there is. You may come across some useful things to try out that could make a bit of a difference to you :cow-wave: :cow-wave: :cow-wave:


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Re: New to this and feeling very guilty

Postby Wobbly woo » Sun Apr 27, 2014 7:57 pm

Thank you xx :-D
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Re: New to this and feeling very guilty

Postby denys » Sun Apr 27, 2014 10:57 pm

Hi Wobbly woo and :welcome: to the forum :cow-wave: :cow-wave:
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