For those of you who've had fibro a long time

All your fibromyalgia experiences, questions and answers.

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For those of you who've had fibro a long time

Postby Theresa34 » Mon Sep 01, 2014 2:19 pm

Having been diagnosed with fibro in Feb this year, I feel like I've been on a roller coaster. Sometimes I feel almost normal, then suddenly the fatigue will hit out of nowhere or the pain will come without warning. Some days the fatigue is worse and some days the pain is worse. I think the Amitriptyline is helping me pain wise quite a bit as I don't need painkillers constantly. I'm wondering about the long term prognosis. I feel I may have fibro more mildly than most of you. Some days maybe not! Anyway, have you girls/guys started out with mild fibro and gotten worse over the years? Or better?
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: For those of you who've had fibro a long time

Postby Chickenosaurus » Mon Sep 01, 2014 2:45 pm

I've had it for 16 years. It has generally got worse on a couple of occasions then stabilised.

When I first had it I tried a 'mind over matter' approach & kept working & trying to do as much as possible. Not a good move, but the mantra at that time was that exercise sorted it all out (!) Of course, my ability to work, never mind do other stuff declined over the next few years.

Then I got pregnant and my pelvis became unstable. That was when I found out I had hypermobile joints (instead of the 'good range of movement' physios told me I had!) I spent the last 4 months of my pregnancy in excruciating pain & unable to move. These pelvic problems persisted after my son was born and I still get some now - he's going to be 11 in a few months.

What I'm basically trying to say is that fibromyalgia is probably affected with your other medical conditions, behaviour and life events. As you've been diagnosed with a mild version, hopefully you can be on the lookout for ways to keep yourself fit and avoid making it worse. Please don't 'push through' as it really doesn't help at all! Good luck! :-D
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Re: For those of you who've had fibro a long time

Postby Hellyn » Mon Sep 01, 2014 2:52 pm

Nope....sounds about right.No one has it worse than anyone else...we ride the roller coaster on our own ride with good and bad turns that are unpredictable. Some have other conditions alongside but fibro itself is individual but has the same presentation to varying degrees.

We all have days we can and days we can't and it is something that is longterm...there is the crunch. Managing it a bit of a hit and miss thing....but the best way I find is to not be governed by it but work with it and what I can do, plan ahead with a proviso of jumping ship if I have too...and look after my needs.

The challenge...the brain fog...that is the one downer especially with the meds...but hey....those are duvet slumming days....where watching a damn good movie is in order...

Fibro does have benefits it gives me permission to be utterly selfish and my family understand this....thank goodness.

When days are good i appreciate them...knowing that there will be a pay off down the line, so enjoy the good bits and be selfish and kind to yourself on the rotten ones..


bless :-D
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Re: For those of you who've had fibro a long time

Postby FluppyPuffy » Mon Sep 01, 2014 3:21 pm

I think things may have started off pretty mildly, but as I was initially misdiagnosed, then treated for something completely different to FM, I'm not 100% sure how mild or severe things were for me in the earlier days. My initial symptoms were balance and hearing related, dizziness affected me daily {still does} with numerous attacks leaving me on the floor in a heap and quite often :puke: :puke: :puke: :puke: :puke: Along with this I became unable to judge speeds, distances and space sizes, all of which contributed to an initial dx of Meniere's Disease. I was put on numerous meds, underwent various positional manipulations, attended sessions to try and retrain my balance and a whole host of other things. But instead of things showing even the slightest improvement, more and more symptoms kept appearing until I was referred to the Rheumy after developing more problems incl pain all over. It was after seeing the Rheumy that I was told it was FM, and probably had been all along, which was why non of what I had tried previously had been of any help.

Since then, changes in meds, and the need for something stronger at times would suggest that things have worsened for me, as well as other problems/conditions developing and being dx'd {CFS and Diabetes incl,} all of which add their effects to the mix.

Reading posts from others, it would suggest that the future prognosis for the majority of us could be an intensifying/worsening in symptoms, having further impact on our lives. This is only a possibility tho, so may not happen to all of us. Getting things as under control as possible could help reduce these possibilities to some degree, but cannot be guaranteed unfortunately :( :( :( :(

There are some tho who find that things barely change for them over time, and they can live a life similar to what they had preFM dx with just a little help being needed during those times when the hurty meter gets turned up for them. Whenever someone mentions that they seem to be affected to a lesser degree than others, it almost seems to have an apologetic tone about it, which it shouldn't be as, to the majority, once someone has an FM dx they are in the fibrofamily, just as we all are. And rather than looking at things based on levels/degree/extent of how we are affected, taking each member of our little enclave as having their own particular version of the condition tends to be how things bobble along on here.

Living with any chronic illness can be likened to being on a rollercoaster, esp in the early days as you are learning about what you have been dx'd with, just how it is affecting you, and how best to live with it all at the same time. As you become more knowledgeable tho, the drops and loops can become a little less daunting to deal with when they do come up on you.

What you've described happening to you is fairly typical of what happens/happened to a good number of others on here too. That doesn't mean that things will follow a similar course to what others have gone thru over time tho. You may find that things stay pretty stable and even for you, and that with the cocktail of meds, treatments, exercise, pacing etc you are able to live a pretty normal life. If things do worsen tho, it doesn't mean the end of everything as there is still an awful lot that can be enjoyed :bear-dancing: :bear-dancing: :bear-dancing:
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Re: For those of you who've had fibro a long time

Postby SchroedingersCat » Mon Sep 01, 2014 3:32 pm

I was diagnosed in 2012, but can trace symptoms back well before then (first major pain issue was in Feb 2010) to a severe bout of flu in 2004 which led to a PVFS that lasted over a year. From 2010 I'd say the pain has got worse, and is more widespread, but the fatigue attacks have pretty much stabilised since 2012, and I live a pretty busy life. I'm off camping this weekend, for example, and will be on the go constantly. I'm still unmedicated. I tend to think I have FM pretty mild too, and have no accompanying other medical conditions. Some days I almost feel normal, albeit normal for a 70 year old (my mum creaks and aches less than I do), other days I'm in pain and tired and wish I could stay in bed, but I almost never do. Got up on Friday feeling like death, but went to work anyway, by teatime I was ok. Go figure.
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Re: For those of you who've had fibro a long time

Postby rich44 » Mon Sep 01, 2014 3:39 pm

Very similar to mine acute glandular fever followed by PVFS then CFS then fibromyalgia. That all started the tail end of 2003.

Ive been relatively stable in all that time, some ups and downs but nothing too serious until last October when it went completely Pete tong, 2 hospital stays for suspected appendicitis, lots of appendicitis pain but no infection.

Since then I've been signed off apart from a few months in the spring and I'm signed off again now.
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Re: For those of you who've had fibro a long time

Postby Theresa34 » Mon Sep 01, 2014 3:42 pm

Chickenosaurus wrote:I've had it for 16 years. It has generally got worse on a couple of occasions then stabilised.

When I first had it I tried a 'mind over matter' approach & kept working & trying to do as much as possible. Not a good move, but the mantra at that time was that exercise sorted it all out (!) Of course, my ability to work, never mind do other stuff declined over the next few years.

Then I got pregnant and my pelvis became unstable. That was when I found out I had hypermobile joints (instead of the 'good range of movement' physios told me I had!) I spent the last 4 months of my pregnancy in excruciating pain & unable to move. These pelvic problems persisted after my son was born and I still get some now - he's going to be 11 in a few months.

What I'm basically trying to say is that fibromyalgia is probably affected with your other medical conditions, behaviour and life events. As you've been diagnosed with a mild version, hopefully you can be on the lookout for ways to keep yourself fit and avoid making it worse. Please don't 'push through' as it really doesn't help at all! Good luck! :-D



Thanks hun x I'm in the mind over matter frame of mind at the moment and I do push through! I started exercising a few months ago but had to stop due to a flare. I'm going to try again once the kids are back at school. I wasn't diagnosed with a mild form of it, rather I feel its mild compared to others. The rheumy has also tagged me with some cfs but not fully i don't think.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: For those of you who've had fibro a long time

Postby kezza1 » Mon Sep 01, 2014 3:50 pm

I have had fibro for 13 years now not had flare up in four years but had one from april this year due to attack at work the past few weeks it has got worse and I am on high meds taken annual leave this week instead of been signed of sick due to last meeting where they said if I was off again b4 end of this year they will consider terminating my contract. It is a horrible situation to be in my memory is getting worse got the shakes and the pain is unbearable until the pain relief kicks in for about an hour or two but I work 7 days on and 7 off meaning I do 65 hours in 7 days what is the best thing to do? :cry:
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Re: For those of you who've had fibro a long time

Postby Theresa34 » Mon Sep 01, 2014 3:50 pm

Thank you all for taking the time to share your stories x It does help to hear how fm has affected you over the years. I also have psoriatic arthritis which I was told was in remission so not on meds for it at the moment (diagnosed last year). I also have ibs although i question that one! My hopes for me long term would be not to get worse and to pace myself as much as possible. I have some support from family but not a great deal. But then again, we are all learning as we go. Its hard on family when there is someone chronically ill. None of us signed up for this so it seems unfair that we and our families have to go through this.
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: For those of you who've had fibro a long time

Postby Theresa34 » Mon Sep 01, 2014 3:52 pm

kezza1 wrote:I have had fibro for 13 years now not had flare up in four years but had one from april this year due to attack at work the past few weeks it has got worse and I am on high meds taken annual leave this week instead of been signed of sick due to last meeting where they said if I was off again b4 end of this year they will consider terminating my contract. It is a horrible situation to be in my memory is getting worse got the shakes and the pain is unbearable until the pain relief kicks in for about an hour or two but I work 7 days on and 7 off meaning I do 65 hours in 7 days what is the best thing to do? :cry:


I cant imagine how bad it must be having this and having to work :( My memory is rubbish too. I used to have a great memory. Now I forget things almost instantly or I cant follow a conversation. Frustrating! Are you able to find work with better hours?
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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Re: For those of you who've had fibro a long time

Postby rich44 » Mon Sep 01, 2014 4:19 pm

My memory used to be flawless total recall, watched Dr who Saturday and looked at the synopsis again today and couldn't remember any of it
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Re: For those of you who've had fibro a long time

Postby fatalrazkaz » Mon Sep 01, 2014 4:21 pm

I used to get pains in my hands and right shoulder when I was in my late teens around 1975. I was sent to Rheumatology but they didn't diagnose anything. I lived with these pains for several more years, then I had my first child in 1992 aged 34. I had a very long labour (44 hrs) and my daughter was born dead but they managed to resuscitate her. I went back to work full time when she was only 12 weeks old but when she was 8 mths (1993) I could not carry on. I was so tired and could not concentrate at work.

I was signed off by a Dr (not my own) with 'chronic stress disorder'. He suggested I leave work as this was the only way to take stress off of me. I struggled on in pain, in fog, and in exhaustion, but whenever I saw my Dr she would always fob me off with things like "you've got young children of course you are tired" (had my second daughter aged 38). Moved house in 2001, changed doctors surgery, but still got fobbed off by our new (female) Dr. I saw her for 11 years telling her my symptoms over and over but she just kept fobbing me off. She tried to tell me I was depressed. I told her I wasn't but still she had me assessed. End of assessment the woman says "your not depressed" I said "I KNOW I'M NOT, I TOLD THE DOC I WASN'T! Lol.

So now we have 19 years (2012) of being fobbed off by two doctors. Then I get Plantar Fasciitis. I need a steroid injection to get rid of it after having it for 6 months. Only 1 doc in the surgery can do it. A male doc. At the appointment he tells me the injection will be painful. I explain pain is nothing new to me and go on to tell him all my other symptoms. Without a second thought he immediately said "I'm going to refer you to Rheumatology to see if you have Fibromyalgia"!! WHAT??!!! I'd never heard of it.

My appointment came through and hey presto, "Yes you have Fibromyalgia.........oh and you also have Osteo-arthritis!" I don't understand how I can tell a doc once my symptoms and he hits the nail on the head first time but others didn't have a clue for nearly 20 years!! And yes, after having it this long I find pretty much everything a challenge. My wonderful hubby has taken over most of the cooking even though he works (an upgrade on my previous uncaring, unhelpful one :-D ) My animals keep me going as they have to be looked after. I am now nearly 57 so age is also creeping up on me and I am definitely worse than I was a few years ago. :cry:
Last edited by FluppyPuffy on Mon Sep 01, 2014 4:29 pm, edited 1 time in total.
Reason: Split paragraph into smaller ones for easier reading.
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Re: For those of you who've had fibro a long time

Postby whiterose » Mon Sep 01, 2014 4:31 pm

I was diagnosed with inflammatory arthritis in 1996, but in 2002 was told it wasn't that but was Fibro. It has got steadily worse over the years, and although I'm still able to work, (work have been very reasonable since I took them to a tribunal for discrimination of a disabled person)it is getting more difficult with pain, and fibro fog.

I've just had to have a week and half off work with a flareup (touch allodynia so bad I couldn't stand clothes on my back, and very bad joint pain) but i'm getting better again now.
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Re: For those of you who've had fibro a long time

Postby FluppyPuffy » Mon Sep 01, 2014 4:34 pm

Theresa, there are quite a few replies to this topic where it has been cross~posted on FB if you want some additional thoughts and perspectives.
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Re: For those of you who've had fibro a long time

Postby Niccjs65 » Mon Sep 01, 2014 5:27 pm

Hi i was diagnose this year but from what i've have learnt i may have been suffering it since i fractured my lower back when i was 14 i am now 48.
I have always until last year put all my pain and problems down to my injury as it was months after the event before i knew i had, it was when i was reduced to dragging myself about via furniture etc as i was in so much pain. my parents finally took me to hospital where the fracture was diagnosed.
Then due to the problem when i was 33 i went head first down stairs and landed on my head injuring my C7. so now i was dealing with lower an upper spine pain.
Since then i have had megga pain on and off but always put it down to the spinal problems including an unstable pelvis which i am always having put right by my chiropractor. I also had a bout of pneumonia some years ago to add the the list.

I got to the point where i'd have days where i'd crawl upstairs as i felt like an old person and others i can skip up them.
i thought i must be imagining it all. Pain so excruciating one min. id cry the next it was gone. Tiredness was another problem but i put it down to being over weight. The list of aches pains etc were as long as my arm. :cry: :cry: :cry:

It was only after i read an article on FB and it was like i was reading about myself and alight being turned on :-D :-D :-D i realised perhaps there was something more to it all.
Spoke to the Dr and he said yer probably but no tests so i left it for quite a while then i kept reading articles and realised there was a way to find out so i went to DR again and demanded to be tested.
Short of it was, i was diagnosed by rheumatologist and now feel a lot better.still have the good and bad days but know what i'm dealing with,i try not to take medication unless i really have to. I've lost 3 stone with more to go, as well to try and get healthier and i swim regularly.

I am determined that this will not control me but i will control it as best i can.
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