Fibromyalgia progression?

All your fibromyalgia experiences, questions and answers.

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Re: Fibromyalgia progression?

Postby SuperCat007 » Sat Jan 05, 2013 11:07 am

I do think that Fibromyalgia is progressive in the sense you are talking about (though not medically it doesn't do permanent irreversible physical damage) and it does get worse over time. BUT I have found that over the years I have become better, the times between being really bad are better and last longer. Each time I have a recovery I am better and can do more, but each time I have a relapse or flare the symptoms are much worse and more debilitating. It is different for everyone though.

Just remember that people do get better, I was one of them. But try not to let life get to you, or get too stressful. If you find yourself in a position where your fibro is getting worse do your very best to get out of it ASAP. I wasn't able to do that for various reasons and I'm really unwell again now and regretting not doing something more drastic quicker, but next time I'll be more aware and will react quicker. It's a learning curve, learning about your body and you, things you never needed to know before. But I hope you can see that it isn't all negative and you'll get worse and worse, there is a light at the end of the tunnel, you just need to keep clinging on long enough to reach it!
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Re: Fibromyalgia progression?

Postby jazzbabe » Sat Jan 05, 2013 4:55 pm

Don't ever think it's psychological it isn't! I had years of specialists telling me I was imagining it so it was a relief to find there was something wrong.
I discussed the progression thing with my GP the other day and he's unsure. I know there were studies done in the USA and there was something about different types of fibro.
If you get it via a virus or illness it wasn't progressive but if it came from trauma it can be, at least I think that's how it was.
My GP is sceptical and says it's a bit of a woolly idea but who knows.
Mine is trauma as I had a pretty nasty car crash three miscarriages with severe blood loss and ectopic pregnancy with catastrophic blood loss and nearly died then another car crash so I've pushed my luck!
I do wish specialists would listen to patients, just because they haven't scientific proof it doesn't mean it can't happen. When I damaged my neck in the first crash I was pretty much paralysed down one side but I was told the damage wasn't enough to cause the symptoms, there I was with dead arm which was freezing to the touch and a leg that didn't pick up and apparently I was imagining it! The fact that other people could feel how cold my arm was and the fact I could stick needles in my leg without feeling it wasn't enough to prove that actually I had done enough damage and their normal outcome for that amount of damage wasn't my normal.
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Re: Fibromyalgia progression?

Postby FluppyPuffy » Sat Jan 05, 2013 5:43 pm

I don't think there's anything normal when FM is involved Jazz :facepalm: :facepalm:

Like you, I had some experiences that over time added their effects to trigger things off. Some were physical, some were emotional and some were psychological. I'm not heard the thing about it being triggered by illness means it isn't progressive, whereas being triggered by trauma means it can be. It's another of the possibilities that needs researching before it can definitively be answered, just like so much about FM needs.

I'm with you in wishing that the medical fraternity would listen properly to what a patient has to say. If they did, and noted things down such as what the patients thinks may have been the cause, it would not only make some interesting reading, but could also help provide the basis for research to start.
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Re: Fibromyalgia progression?

Postby jennthefunkyranger » Sat Jan 05, 2013 9:53 pm

Oh dear - not liking the sound of trauma related FM tending to be progressive, mine came from a car accident, though nowhere near as bad as yours. I got up and walked out of the car, apparently uninjured at the time.
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Re: Fibromyalgia progression?

Postby jazzbabe » Wed Jan 09, 2013 6:06 pm

I walked home from the first accident and seemed ok, my ex refused to take me to hospital because he didn't want his friend (the driver) to get into trouble! I lost the use of my arm but it seemed to get better but then 18 months later I was pretty much paralysed down one side. Of course there was the fight over whether it was from the crash even though there is plenty of evidence that it can take up to 2 years for whiplash injuries to surface. I had an MRI and it showed C3 to C6 were ruptured and bulging but apparently it was suddenly wear and tear and couldn't possibly be whiplash. The second crash was a London bus hitting our land rover from behind and we drove home but got checked out and I was pretty sore but seemed ok but then started to fall apart. We made the BBC radio traffic news as Vauxhall cross had to be closed to retrieve the bus which was totalled, our Landy was pretty ok, needed rear quarter panel and bumper! I'm surprised we didn't get done for littering though, there were four huge piles of mud where the impact had dislodged all the junk from the wheel arches! The second crash was 2006 and by 08/09 I was beginning to suffer and in 2011 I was told it was fibro. After the episode before Christmas there is now doubt due to the progression and severity of the joint pain.
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Re: Fibromyalgia progression?

Postby Aliscat64 » Wed Jan 09, 2013 9:19 pm

Really dont know :( I was told its not degenerative which was/ is brilliant but whether because our bodies are getting naturally older anyway it contributes to fibro symptoms probably.

Had symptoms for years and diagnosed last may. Never quite know when Im going to be in agony, its so out of the blue, but I do know fighting it helps big time. I had a reasonable autumn then stopped work for xmas and was in agony for 10 days, why? less movement?
I childmind you would think less stress/lifting would help symptoms at holidaytime but no complete opposite!! :-?
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Re: Fibromyalgia progression?

Postby haty 2010 » Thu Jan 10, 2013 10:59 am

I had a total hysterectomy following 20yrs of endometriosis in 2010.I was put on hrt patches,went back to work 6 wks after as I felt fine,and love my job.
4mths later I started with the fatigue,headaches,aching joints,sleeping problems.I had tests for arthritis which were negative.
8 mths later rheumatologist told me it was FM and told me my gp would support me as I felt we had a good relationship.
It has now been 13mths and I've had amitriptyline and fluxotine but don't think it did alot,even upping the doses....I also had gabapentin since last october but felt the same.
I've had a lifetime of paracetamol,ibuprofen and codeine and again didn't have a lot of relief from them.
on n.yr.eve I went really downhill,resulting in me being in bed for 3 days with such widespread pain,that all I can say is "the pain is ABSOLUTELY everywhere"'.
I went to see "A" doctor at my surgery who sent me to A&E with a suspected blood clot...What!!!!! anyway,Dr there told me to come off gabapentin and just to take codeine.
I'm still really uncomfortable,not able to get away from the pain.
I walk like I'm 80 odd and can only do a slight chore then I'm hurting more again.
my gp on Monday told me to just have codeine 15mg during day and 30mg at night but I'm still awake,can't sleep,too painful to sleep. they're referring me back to rheumatoloby for their input and want me to see CBT.
Im also being referred to neurology and have been told it could be MS instead.
I'M AT A LOSS AS WHAT TO DO,WHAT TO TAKE,IF IT IS FM NOW.
today it has taken me 20 minutes to get dressed. my arms are hurting SO much and struggling to bend my fingers, i feel like they are on fire...thank god i can type with the tips.
I want my life back and this to end:«
Jane. :cry: :cry: :cry:
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Re: Fibromyalgia progression?

Postby shazq » Thu Jan 10, 2013 4:47 pm

Hi Haty

codeine is not strong enough to control your pain,did your gp not try you on anything else besides the Ami`s & Gaba`s`? there are many other meds you can try. Its just a case of trying different meds until you find the right one/combo that suits you.

Here is a link of some meds used in treating fibro, you could go through it with your gp.

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx

Your gp might be waiting on your Rhuemy to see what they are going to dx you with this time before they give you any more meds. ?
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Re: Fibromyalgia progression?

Postby *Lisa* » Fri Jan 11, 2013 2:53 pm

Personaly the fibro HAS damaged my body and made me progressivly worse...

My severe stiffness in my back has caused many severe muscle spasms causing inflammation/pain and my discs to pertrude and degenerative disc disease PLUS its pulled all my spine out of alignment and with all this has then caused sciatica :roll:

Iv also been told i am at risk of arthritis as my stiffness restrics the joints causing them to work harder and in turn wear and tear.

On top of this my teeth are grinding down and my mouth is all chomped to pieces where i have stiffness and spasms in the jaw. On one occasion having a scan of my head/teeth/neck/jaw the dentist could clearly see my whole neck had moved right out of place from the x-ray 6months before all caused by stiffness and spasms :roll:

My knees are on there way out and swell and click and grinde cause when i try and walk as im so stiff in the back i cannot walk straight and my posture is slumped so my knees bare alot of the force.

Everyone i speak to also seem to have gotten worse

happy dayz! :chicken-dance:
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Re: Fibromyalgia progression?

Postby Pinkprincess205 » Sun Jan 13, 2013 2:47 pm

I would say yes too, i have had fibro for 3 years in april, and i am in more pain now, i get alot stiffer and alot more places ach and different places hurt than they did 3 years ago. Im now 31 so not really looking forward to how my future is planned out, hopefully a cure will be found out over the next few years, that would be great lol
vic x
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Re: Fibromyalgia progression?

Postby haty 2010 » Sun Jan 13, 2013 10:46 pm

thanks to all for your comments.
I feel a slight better than this morning. I can put my hair in a bobble and put sox on!!!!!
I'm off work for 2 weeks so hoping it will continue to decline :lol:
I find I get down in the dumps cos iv put on weight and don't feel able to exercise .I've read on here and the website about various exercises and wot to eat/ not to eat but find it impossible when reading as to wots good/bad for u as there's so much information....causing me stress.
please help to define things for losing weight and improve my fibromyalgia.
Jane
x
p.s...anyone in Derby????
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Re: Fibromyalgia progression?

Postby FluppyPuffy » Sun Jan 13, 2013 11:33 pm

Exercise~wise, as we're all different, working within your capabilities/limits is the usual advice. Even if you can only do one rep of a stretch or exercise, that one is a 100% improvement compare to doing nothing.

Diet~wise, I'm having some sessions to help me get to grips with CFS, and one of the areas we looked at recently was diet. The general advice tends to be eat as healthily as you can. Working on a low Glycemic Index basis is what is advised in my CFS manual, maybe that could be somewhere for you to start?? Or maybe see if there are any self~referral weight loss schemes in your area :-? :-? There will be other possibilities, but being a tired :teddy-bear: with a very foggy head is stopping anything else coming to mind.
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Re: Fibromyalgia progression?

Postby maxtomads » Sun Jan 13, 2013 11:46 pm

Hi haty
My son's in derby & I sometimes visit - will let you know when I'm going down & we could maybe meet for coffee?

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Re: Fibromyalgia progression?

Postby jennthefunkyranger » Tue Jan 15, 2013 10:05 pm

Hi Haty,

I'm not a million miles from Derby, I'm in Stoke
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