Getting worse?

All your fibromyalgia experiences, questions and answers.

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Getting worse?

Postby Cybermum » Sat Apr 20, 2013 1:29 pm

Considering the medical profession say that Fibro doesn't get worse? How do they know this? And how can they know?
Because I certainly seem to feeling worse as time goes on. I have had fibro for around 8 years, 3years of that was tests, then got diagnosed finally last year.

But now it's got to the stage where the headaches/migraines are getting worse, I am struggling with holding things. The amount of times I have dropped my phone. Sometimes it's almost like I cannot feel it before it drops out my hand. Other times it's like my hands just freeze as they are so I cannot grab it before it falls. My awareness to noise and light seems to be even stronger, and more unbearable.

Worse of all though is my back :( I can't even stand up for long till the ache and pain becomes so unbearable I either have to sit down quick or bend forward. Trying to do anything round the house when it's like this is impossible. Even washing up or making a cuppa has to be stopped quick because I can't take the pain anymore. Walking in nigh on impossible when it's that bad too. My stepson ends up having to take my boys to school when my partner is at work because I cannot walk even 10 metres.

I have been to my GP before and her response is because I am overweight and need to exercise. In fact she pretty much blames that for everything. I don't have a lot of faith in her as I kept going to her about pain in my left shoulder, and she just kept dismissing it saying it was a pull etc. One day she was off and I saw a registrar, so she referred me for an ultra sound on it. Surprise, surprise, I actually have a tear in my shoulder and have had to cope with it for 2 years.

I went back to the surgery for results and ended up seeing the GP again and she sent me away saying nothing they could do :shock: . I'm sick of trying to explain things to them now. I have literally worked my way through that surgery and not happy with any of them. Even the head GP there is useless. He miss diagnosed my son(6 years old) last month and sent us away saying he had a bad cold. Saw another GP a week later who sent us straight to hospital. He actually has Kawasaki Disease. He was very lucky, as if caught too late it can damage the heart and be fatal.

But that is going off subject and me whinging. lol. So back to the original question. Is it all in my head that it seems to be getting worse as time goes on?

Thanks if you got this far.

Last edited by FluppyPuffy on Sat Apr 20, 2013 1:46 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: Getting worse?

Postby FluppyPuffy » Sat Apr 20, 2013 2:46 pm

FM isn't regarded as a progressive condition like arthritis, for example, because it doesn't cause any harm to joints etc. However a decent doc/GP will acknowledge that, with how symptoms change/appear over time, that things do worsen for us. If you have a look thru the topics and posts, you'll find that it is a similar situation for most of us, the longer we have been part of the club, the worse things have become for us. I'm 13 years into my quest, and ince being dx'd with CFS nearly a year ago and having a number of sessions about how to manage and live with that condition, it has become blindingly apparent just how much things have intensified for me. I can only do something for a max of 5 mins before it becomes unbearable to carry on whereas I did used to be able to manage 10 mins before things started shooting up the scale. So to answer your original question
Cybermum wrote:
Is it all in my head that it seems to be getting worse as time goes on?

It is quite possible that things have changed and intensified/worsened for you over time. Even with these changes tho, it is still possible to wrestle some control back from FM with the right and most suitable meds, treatments and support that you need.

With what you have said about the other docs at your surgery, it might be worth looking into what is involved to transfer to a different one in your area. You could contact the other surgeries in your area and ask if they have any other FM patients in their numbers, and if so, is there a particular GP that tends to see them as patients.
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Re: Getting worse?

Postby shazq » Mon Apr 22, 2013 4:43 pm

Hi cybermum

I have def got worse since being diagnosed with fibro, i dont have flares my pain is there 24/7, my mobility has got to the stage where i need a walking stick, i cant get into my bath i have a walk in shower with a seat, i have an electric bed as it helps me to get in and out of bed, i drop things, i forget things and i am still getting new symptoms :evil: 6.5 yrs ago i managed to work and never sat down until the evening i was always on the go. Now i have no choice but to spend my days resting. :twisted:

Yes it def gets worse.
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Re: Getting worse?

Postby holmess » Mon Apr 22, 2013 6:59 pm

I have to agree. Over the last few months (since the last big flare) I have not been pain free for one day and symptoms are more pronounced!! I'm still working but struggling a lot, I really don't know how I manage to get through some days :cry: . I think I'm going to have to do a lot of re-thinking, if I can get the scrambled brain to work with me :shock:
Hope everyone is feeling as good as they can do :-)

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Re: Getting worse?

Postby sparkles87 » Mon Apr 22, 2013 7:53 pm

I have to agree with you my pain is more severe now than when I was first diagnosed i find it harder to do lots of everyday tasks now peeling veg and fruit and washing up etc

I also think the longer we are on each medication the less effective it becomes therefore the pains become worse.


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