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The UKFibromyalgia Forums • View topic - fed up with constantpain



fed up with constantpain

All your questions and experiences of medication and treatments on the NHS or Private Healthcare.

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fed up with constantpain

Postby mililly » Sat Jun 15, 2013 7:21 pm

Hi
Ive been suffering for 3 months now and back to rheumatologist next wk for 2nd time and hopefully dx of fibro. Ive been on co codamol then tramadol and now im on 50mg fentanyl patches oromorph and 75g amytriptoline at night. Im still in lots of pain. Cant do everyday things like get dressed go up stairs bend fown etc without alot of pain. Is this the norm or is the what a flare up is..im just not sure if this is how its going to be from now on..im really struggling.
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Re: fed up with constantpain

Postby ouchiemama » Sat Jun 15, 2013 7:43 pm

Hiya, I am quite newly officially diagnosed & am wondering the same thing!!

This whole year I have been suffering like you & I am getting a bit concerned this 'flare' is here for ever!!

Sorry no advice, but I am interested to see what replies you get :hugs:

XXX
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Re: fed up with constantpain

Postby FluppyPuffy » Sat Jun 15, 2013 8:30 pm

Sorry to hear how you're feeling at the moment, with something like FM, every area of your life is affected in so many different ways. Things that we used to take for granted can seem insurmountable and just overwhelm us :( :( :( :(

It's not easy to say things are the norm where a condition like this is concerned as we are all affected so differently. For some there are periods when things are worse, but then things ease back to a more comfortable, manageable level for them. For others tho, myself included, everything is there all the time, and instead of things flaring up and easing back off again, the pain, stiffness and everything goes up another level or 3 when things are bad and stay there until this new level becomes our baseline until the next thing comes along to turn it all up yet again. I've been like this for over 13 years, despite all the meds I've tried along the way and am currently on. In fact, I can't recall the last day where I had any time pain~free.

I'm not trying to upset you or cause you any additional worries, just trying to explain that yes, for some of us this is how life with FM can be, but it doesn't turn out like this for everyone. Once you get a definite dx and know what you're dealing with, with the various types of meds and treatments that can form the cocktails we each have, you could well find a mix of things that makes things so much more manageable for you.

As for the daily things that are now so much more difficult to do, with some trying out of ideas and maybe making a few changes to things, it is possible to make them a little easier to manage.

I know it all seems very bleak at the moment, esp with you still waiting for a dx, but there are ways to get round these problems and make life a little lighter and brighter again.


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Re: fed up with constantpain

Postby gimpyphil » Sun Jun 16, 2013 2:38 pm

Hi,I have been in pain for 11 years now.Going for my second visit to pain clinic at the end of July,if it goes like the first visit then it's going to be a waste of time.
I have to say I am fed up with it all, and now with bedroom tax and my DLA being up for re-assesment next year death seem's like a good idea right now.Can see why people kill themselves and have to say I have given it a thought on more than one day.
Hope things get better for you soon.

Phil.
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Re: fed up with constantpain

Postby LouLou » Mon Jun 17, 2013 12:28 pm

Hi milily

Sorry to hear how you are suffering right now. As Fluppy says it's hard to say what the norm is with this condition as it affects us all so differently.

For me I am in pain 24/7 it's always there. My good days are when the pain is in the background and I can function fairly normally but it's still there. My bad days/flares are when the pain levels increase to such a dgree that I can;t do anything other than lie down and rest till it eases.

Over the last 2 years I've had various "Flares" lasting different lengths of time. Sometimes I have a bad flare day and within 24 hours things have calmed down, I've had one last 3 weeks and so on.

Also, all of us seem to have very different levels of FM, as in some people can still manage to work and do things others can't.

Other than the usual advice of resting, hot water bottles, tens machines etc there isn't very much else we can do during these times. What I tend to do during a flare is try and think of anything that may have triggered it and I usually find that it is down to me either doing too much, not resting enough or being worried/stressed out about something. Maybe this could be the same for you?

Take Care and fingers crossed your appointment goes well
xx
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Re: fed up with constantpain

Postby elliemay4 » Wed Jun 19, 2013 4:56 am

I have been in constant all over body pain for 13 yrs. I was teaching and was head of department but I had to give it all up when I couldn't cope with pain and meds side effects while trying to run the department and teach. During the last four years it has really become a struggle. I have a hospital bed from social services because my carers complained about bad backs while washing me. The mattress on this bed is bloody awful! I have had it changed but is still the same. I can feel the steel poles under the mattress when I lie on my side. My hip feels as though it is lying on concrete! I also have a really bad sweat rash on my back which prevents me from lying on my back.

The meds I take just don't seem to work. I am taking 140 mg MST Continus, 400mg Pregabalin, 225mg Venlafaxine, 50mcg Fentanyl patch plus I take 30 mls Oramorph when the pain just become unbearable. After doing some research on the Internet recent studies have shown that opoid medication just does not work with fibro patients. Something to do with opoid receptors in the brain, I cannot remember (fibro fog!). So, WHY am I taking all this opoid medication. I am seeing the GP this week and am going to try to come off morphine or at least reduce the doseage.

My sleep patterns are awful. I sleep for one to two hours then wake up. If I am lucky I may get another one or two sleeps during a 24 hr period. I have asked GP for sleeping tablets or muscle spasm tablets because they are really bad too, but she refuses to prescribe anything that will further reduce my heart rate because of the morphine dose that I am taking. I am hoping that by reducing the morphine perhaps I can get a bit more sleep and my spasms will reduce.

Over the last 12 years the doctor and consultant have increased and increased my meds from the usual amitryptaline, Pregabalin and Cocodomol to stronger and stronger meds. However, when they reach the opoid meds and they do not work they say there is no other stronger and I just have to learn to live with the pain. Well for the last 3 years I have become bedridden, in a wheelchair and very very rarely go over my doorstep. Other than my carers and my two children aged 21 and 22, I do not see anyone really. My quality of life is zilch and I have also had suicidal thoughts because what is the point. If I were an animal they would have put me down years ago!
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