Fibromyalgia

star-pants

I have to echo dlofnep - I had pains from when I was 11, and was only diagnosed when I was about 23/24, I was given difene & that destroyed my stomach & it's not been the same since.
I did try different medication but none of it agreed with me / helped much.

Fibro can be very personal, affects people in different ways, different triggers etc.
Stress, depression, lack of sleep, diet, etc can all have an impact on it.
I have insomnia a lot of the time so my body doesn't get to relax/regenerate properly. The cold or certain physical activities set me off too.
My mother has fibro in her chest, and certain activities set her off as does stress, very much so.

She doesn't have to do treadmills etc, she could do simple things like stretching and gentle exercises, maybe even yoga would suit her.

Bidd

Please don't push your Mother at the moment. It does sound as if she is depressed-depressed with living with this awful disease plus Type 2 Diabetes. That's a lot to deal with. Can you talk to her and see how she is feeling? Would she let you go to the Doctor with her and to explain what her activity levels are like/how she is feeling/levels of pain. Plus her Doctor needs to explain to her what Fibro actually is and how it affects the body, it appears from what you've said that this has not been done.

It is not yet known what causes Fibromyalgia so to say exercise can help may not be the answer. There are schools of thought that do prescribe exercise (mainly Psychiatrists, but this is not a Psychiatric illness!!)

On the other hand getting out in the fresh air and doing some gentle walking may help-but in this weather? I wouldn't push it. Cold can really exasperate Fibro pain. In warmer weather of course if she would be able to do a gentle walk and talk with her neighbours would be hugely beneficial imo. This can be an isolating disease and for a lot of people it is.

The best thing you can do for your Mother is to find out as much as you can about this disease. Only then can you help her deal with it.

A few facts: You don't sleep well with Fibro-you wake up exhausted, unrefreshed. Fatigue (not tiredness, or exhaustion) is a huge part of this condition. Sometimes in a bad flare you can be so fatigued you can't even brush your teeth. Yes, it is that bad. Fibro Fog is also part of it. Your brain doesn't work. You forget things, can't concentrate etc. Unremitting pain 24/7 is also part of this disease. It is like somebody hit you with a baseball bat on every part of your body. How would that feel, all day, every day? Now go and do a jog.

Please understand I'm just trying to explain how it might be for your Mother. This is an awful disease and needs to be treated as such. My best wishes to you and your Mother.

Bidd

This link might help:

http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=13702&B1=EM100610B&slvor=10488.1016993.0.1.0.108364&eid=smo23915%40aol.com

sam34

Bidd wrote: »

It does sound as if she is depressed

please dont make diagnosis online. you are not a doctor and medical advice is not allowed here.

squeakyduck

My mum has been down for a very long time before she found out she had fibromyalgia, and even before she had diabeties. She takes no heed of what she is not suppoed to eat, she will cry at me that she is not able to stomach her dinner but I will catch her eating the sweet things she is definately not supposed to have. She has landed herself in hospital because of this a few times.

I will have a look into some of these websites and see what the story is. I was having lunch with a friend that works in the Irish wheelchair society and she comes across fibromyalgia quite frequently. Maybe if my mum could meet with others that suffer from this she will perk up, she loves meeting new people, I just feel myself that if she was a little more active it might do her the world of good.

She's unwilling to get back to me about this personal trainers number as she is convinced she will have to do something like a marathon. Which frustrates me as my brother has MS and is quite active with it, his diagnosis egged him on to get fit although some might not think it a good idea.

misslbs

For those who are suffering with any of the above these aliments or care for or know someone who is the link I am adding would be of great interest to you as new medical finding are proving to be very interesting.

http://www.wpinstitute.org/patient/patient_faqs.html

http://www.imet.ie/

http://www.fibroireland.com/

Judes

Thanks the Fibro site is good, I just had a quick peep at some of the jokes - all too real but made me laugh. I'll look properly next week, when more time. Keep the spirits up.

misslbs

Hi Judes, I'll have to check out them out. Yeah important to keep a positive frame of mind. The cold weather is not a great help but good enough reason to stay by the fire

redketty

Hi

I have fibromyalgia. Not much pain but very bad sleep and all that goes with that, i.e panic attacks, worrying about the future etc.

I have tried all sleep medications ie. sleeping tablets, anti depressents which are supposed to help with sleep but to no avail.. am only getting a few hours sleep each night and finding it hard to cope. Does anyone have any solutions medical or otherwise.

List of medications tried.

Lyrica
Lexipro
Anatripeline
Tramdex
Various sleeping tablets

Would really appreciate some advice. This bloody weather seems to make the sleep even worse.

JoDub

Hi, anyone out there interested in starting a fibromyslgia self-help group, for folks over 40 in Dublin? If there's any interest, we can get the ball rolling. Please pass this on to anyone who might be interested. Thanks.

i-digress

Only 23 so outside your age bracket.

PuppyLove

Hi, I'm not looking for medical advice just feedback please so I hope this is ok to ask.

I have suffered with Fibromyalgia for just over 4 years now and thankfully the last 9 months have been the best of the last 4 years. I am currently working around children who would have underlying medical conditions and find myself having to consider getting the flu injection as a precaution although I know all of them have had their injections. I have not been instructed by my Employer to get the vaccine but they would be in favour of all Employees getting it.

My concern is that by getting the injection that it will 'awaken' for want of a better word the Fibromyalgia causing me to more than likely not to be able to work (I had to give up my previous job after being unable to work for a couple of years due to the severity of the pain.) I didn't get any vaccines last year for the same reasons.

So I was just wondering if anyone had got the flu vaccine and whether it had resulted in any change in your pain or well being? Many thanks in advance.

Anomic

Hey,
Just wondering if anyone could recommend a gp in Cork who is familar with Fibro. My current GP doesnt seem to know too much about it , and was hoping to switch to someone who was more familiar with up to date treatments. Thanks

thecelt

anyone came across anything useful about fibromyalgia lately,
having a rather bad patch at the moment!

i-digress

I haven't come across anything especially useful, no.

In what way are you going through a bad patch? Flare, getting worse, new symptoms or just the uphill struggle of coping with a long term pain condition?

Or all of the above? :rolleyes:

It's so hard, dealing with fibromylgia. Sorry you're not feeling good.

thecelt

I seem to be having a very bad flare up,
worse than usual, now shoulder muscles are part of it all,
was in agony last nite,
its not been so long since the last flareup either!

i-digress

Sorry I didn't reply earlier. Crazy week. Mum has fibro and lupus and she was hospitalised with lung problems.

I think this weather isn't doing any of us any favours. Also, when you're not getting much of a break between flares, it's very dispiriting.

I think the worst thing is the constantness of it all. I thought when I got diagnosed, that I'd learn to deal with it and that would be that. But it's tough all the time and sometimes you just feel snowed under. A bit like you are now.

I know it's not much consolation, but everything will level out soon and you'll feel like you're coping better. That's the thing with chronic conditions, a lot of the time how you feel in your head affects your entire body.

Good luck, and you're not alone

viota

I was diagnosed with fibromylagia today.In bad pain all the time.I also have m.e./cfs. Doctor put me on keral which helps a bit better than nurofen but still painful.

thecelt

i-digress - sounds like you have had a rough patch, hope your mum is doing better.

levelling out doesnt seem to be happening at the moment, seem to be constantly in pain and really tired.

For some reason i was half out it sunday, really didnt feel myself, so much so that i woke up mon and was convinced it was sunday.

Have u ever gone to a fibromyalgia support group?

viota - hope the keral help out, i tried them a bit back, but they didnt do much for me. for a while i found i used to get relief from advil, but thats not so much anymore

star-pants

I too hope your mother is doing better i-digress, can't be easy for her (or you).

Must be something in the air alright, my fibros been acting up moreso than usual lately too, same with my mothers RA & her fibro. Also having lots of the 'not with it' and very very tired too. Headaches are back along with digestive system acting out.

Tis crappy indeed when you don't get a break. I was doing a normal afternoons work for someone, and ended up having to do a decent amount of washing up/drying and my goodness the pain in my hands & fingers was unreal.

It is hard sometimes as said when it's just constant one thing or another, you feel like you're never getting a break, but there are nice moments when it's not so bad and you're distracted from it

viota

nope they didnt work im on arcoxia now they dont work im very fustrated.

i-digress

Thanks. I have six siblings under fourteen (I'm 24), so I was looking after them for Mum. Wouldn't have done it differently, but my body is feeling the extra work.

I'm hoping summer will give us all a bit of relief. Don't know about all of ye, but the damp makes me worse.

I hear you on the medication, viota. I was on Arcoxia for inflammatory arthritis, then moved to amitryptiline after diagnosis. That helps with the sleep.

My real struggle is with painkillers. I try to use heat where possible, but when pain gets to 8 out of 10 or 9 out of ten I need something strong. Difene makes me sick, voltarol didn't work for me, cataflam didn't work for me, zydol worked a treat but gave me hallucinations, and lyrica did nothing...

I have to use a walking stick sometimes, my hip goes into spasm. It upset me at first, but it's amazing what you get used to.

Hope you're all having pain-free weekends

rescue16

Hi people I have been told by a rumatologist that I have fibromyalgia and I would not wish it on my worst enemy . I have been told that it is connected to a car accident I had last march where I had severe whiplash injuries to my neck and back but now they are telling my I have this illness.I see some of ye going on about amytripaline sorry for the miss spelling I am also on this 25mg every night find it ok makes you very tired tough. That buring feeling ye were talking about I feel that every day. Anyone that can give my tips in how to deal with this would be very welcoming . All I can say I feel your pain !!

i-digress

I'm on 50mg at night. Without it I *literally* don't sleep, for others that might not be so much of an issue. Fatigue is part of the condition, so it might or might not be connected with the medication.

Everyone has different symptoms, so this advice is subjective. When you feel sore heat pads can offer relief. I have an electric blanket and I find if I use this I'm not as stiff in the mornings. Some people find ice packs help them, again it varies.

Biggest piece of advice I can give you is to reduce your stress levels. If you've just been diagnosed that might feel hard to do, but it really helps.

Planning ahead is also a big thing. If I have a day out shopping with my sisters, I don't plan anything big for the next day so I can relax and recover. On bad days I prioritise what needs to be done, and on good days I do a little bit more so I'm 'in credit' on the bad days.

It probably seems overwhelming right now. I was diagnosed eighteen months ago, and it's been a huge adjustment. But you get better at coping with it. You learn the triggers to flares, you recognise when a flare is starting, that kind of thing. Learning to manage it takes time, but it makes a huge difference.

Fibromyalgia is a challenging condition, and it can be really tough at times. But I can honestly say that I cope better now than I did at diagnosis, even though health wise I'm worse now.Once you start managing it, you'll feel more in control, and it'll only be every now and then that you feel truly overwhelmed.

viota

the arcoxcia did nothing for me im on melfen which helps a bit and the doctor thinks lyrica won't help.Going back on tuesday probably will be changed again.They will evetually find the right med.

LegacyUser

viota wrote: »

the arcoxcia did nothing for me im on melfen which helps a bit and the doctor thinks lyrica won't help.Going back on tuesday probably will be changed again.They will evetually find the right med.

melfenn is ibuprofen same as nurofen isn't it?

LegacyUser

rescue16 wrote: »

Hi people I have been told by a rumatologist that I have fibromyalgia and I would not wish it on my worst enemy . I have been told that it is connected to a car accident I had last march where I had severe whiplash injuries to my neck and back but now they are telling my I have this illness.I see some of ye going on about amytripaline sorry for the miss spelling I am also on this 25mg every night find it ok makes you very tired tough. That buring feeling ye were talking about I feel that every day. Anyone that can give my tips in how to deal with this would be very welcoming . All I can say I feel your pain !!

Does one have to have pain be sore on all the 14 pressure points or is general pain/fatigue diagnosed as fibro

condra

Redkitty, where did you find a doctor to prescribe all of that?

It seems people with chronic illness so often come across doctors who are either too chicken to try some medications, or so layed back, they hand out prescriptions like lottery tickets!

When you say "panic attacks, worrying about the future", I think you should discuss anxiety with your GP if you haven't already.

Regardless, perhaps you should look into natural sleeping aids. I'm not talking about fringe medicine stuff, just standard tricks to helping with sleep. Ive had a lot of trouble with sleep disturbance, and here are some things which help me:
Less TV/Computer at night
Reading in bed
Hot Milk!

I wish you the best of luck.

sam34

folks I've merged a few threads together here, sorry that it may mess up the order of posts a little.

Natasha, while the research into fluoride is interesting it is far from conclusive so please don't promote it as such.

LegacyUser

I am a Fibromyalgia survivor, I've had the both Swine Flu and ordinary injections for the last two or three years and did not affect the Fibromyalgia. I know this is a little late but if you are in doubt next year get it in October/November