Fibromyalgia

flutterflye

I have looked this up loads online, and spoken to my doctor about it.
And I still am none the wiser!

But does anyone know the basic difference between fibro and me?

The doctor is sending me to a reumatologist soon, to figure out if I have fibro.

The only thing is that the fatigue problem far surpasses the ache and pain problem.
Does this indicate me rather than fibro?

premierlass

flutterflye wrote: »

I have looked this up loads online, and spoken to my doctor about it.
And I still am none the wiser!

But does anyone know the basic difference between fibro and me?

The doctor is sending me to a reumatologist soon, to figure out if I have fibro.

The only thing is that the fatigue problem far surpasses the ache and pain problem.
Does this indicate me rather than fibro?

It's hard to say because the symptoms of both are incredibly complex and there is a great deal of overlap between the two. All fibro sufferers will have pain in joints, nerves and muscles, but while pain is very often found in M.E., it's not essential for diagnosis. Fatigue is a component in both. Despite common belief, fatigue doesn't define M.E., however, if you don't have post-exertional malaise (exercise intolerance), you don't have M.E. Many think it's also a component of Fibro as well. I would guess, though I have no proof, that the cognitive difficulties in M.E. tend to be worse than in fibro.

I'm not surprised you're confused; it can be incredibly difficult to separate the two illnesses. You're being sent to the right specialist to decide if you have fibro.

Judes

Hi Not Crazy!

You really are not crazy - had the same symptoms myself about 2 years ago, got to the stage where one day I just couldn't walk - my legs were like dead weights, couldn't move them, that was me at my worse. But I've been on lexapro for about 2 years now, low enough dosage (10mg) a day -hoping to get that down to 5.

Also, ever since I read a book that I downloaded from an American guy who suffered Fibro for years - I followed his advice and went dairy free last September - what a difference that has made to me.

So between the low dosage of lexapro, dairy free and daily pilates, I spend the first 30 mins I awake doing gentle stretching and sit ups - I feel so much better - (TOUCH WOOD). Everyone who knows me says that the improvement in me the past year has been incredible - they all say the "old me" is back. So you are not crazy - the pain you have to endure is horrible and very real - but I hope you have an understanding doctor as I do - and she referred me to a brilliant rheumatologist who I see once a quarter. At the beginning I was getting injections for pain relief - haven't had them for about 6 months now.

Best of luck - and when you feel at your lowest do something that makes you feel happy - I'm serious when I say this - but laughter and being positive really helps. But try going dairy free - no cheating - I reckon within a few months you will really feel the difference. (A friend of mine says the same about going wheat free - I'm not wheat free but I've cut down on it).

viota

i have both fibromyalgia and me.At the moment i find it difficult to walk.My feet feel like im walking on nails.I have pain my my legs back arms shoulders and neck.My right hand and foot is numb.On top of this is bone shattering tiredness worsened if i go for a short walk or go outside for a half hour i often stay in bed and watch tv.I cant exercise because i wouldnt be able to move from the tiredness.

thecelt

Has anyone tried accupuncture for fibromyalgia?

notcrazy

that's something I suppose! I am really tired of all this at this stage it's been going on for years and there is no end in sight. I can't function properly at all. I wouldn't even go shopping or looking around town as I'd be too tired after it and the headaches are terrible really debilitating. I have been swimming this week so far and I thought I'd drown in the pool I was so weak. I have a few weeks annual leave coming up and I'm going to use that time to try and get myself on track, I have to work because I have a mortgage to pay and no option but I really don't think I am able to work full time anymore. My daughter is lactose intolerant so there might be something in that maybe I'll follow her diet and see how I go
Thanks for the reply it's a lonely station having this and I haven't even accepted that I do have it yet! I have been thinking that maybe it's ME/ CFS has anyone else been diagnosed with one of these and then the other?

notcrazy:eek:

viota

yes not crazy that sounds like me/cfs i was diagnosed me me/cfs first than fibromyalgia.it is possible to have both.I cant do any exercise like walking gym work or swimming.Im just too weak and tired.At the moment im too tired to eat or get out of bed.Thinking of walking to the bathroom is a nightmare. Unusually ive insomnia so i find it impossible to nap.I have to take sleeping tablets

Judes

Seriously "not crazy" do try the same diet as your daughter. I was a cheese fiend - haven't touched the stuff in 10 months! Now I don't miss the dairy - I use soya milk, cream - and soya cheese alternatives. Just check packages for whey, lactose, as milk products are added to nearly everything. But it becomes a fun challenge to find items that are dairy free. I really can't believe the difference it has made to me - and as I said either can my friends and family. And a big plus is weight loss too. Back in 2009 I was signed off work on sick leave for 2 months - as I was so exhausted, immobile and in pain. Now I'm bundles of energy. I get the occasional twinge - but I try to over-ride it in my mind or if I'm feeling a bit "knotted" whilst at work then I put my exercise mat on the floor and have a good old stretch. My colleagues and I have a giggle about it - but better than being laid up in bed. Try it for a few months, take notes of how you feel every day - do a scale of 1-10 in pain and mobility and you should see an improvement. Good Luck!!!

flutterflye

Sorry for further questions, but my head is just wrecked with this!

As I said in my previous post, I've been to the doctor about this a few times, and he's sending me to a specialist, but it'll be months before I know anything.

Can I ask your opinions please?
Don't worry that I will take it as medical advice or anything, as I am well aware that everyone is different, everyone's symptoms present differently, and no one here is qualified etc...

But do you think this sounds more like fibro, me, both, or neither?

As far back as I can remember, I have always been more tired, and had much lower energy than everyone else.
This is all the time, nomatter what.
Then, if I exert myself physically, have a buzy day, have a stressful day/event (even minor stress), or if I am somewhere with a lot of stimuli (like a buzy shopping center with alot going on at once), then I will become increasingly more tired as the day progresses.
I won't usually feel completely bowled over that day, I can generally struggle through the tiredness.
But the following day, and maybe even for a further few days, I feel as if I have the flu.
I will feel an overwhelming urge to sleep on and off throughout the day, I'll feel incredibly weak, and my body and my mind will be basically out of action-only able for very basic things like walking to the kitchen.

The above would be the worst problem for me.

On top of that, I can not remember having even one pain free day.
The pain can be overwhelming, but most of the time it is more uncomfortable and annoying.
I can rarely pinpoint the pain.
It tends to move around at random.
I usually have pain in a few different places at once, rarely just the one place.

My muscles feel weak most of the time.
For instance, I have to take mini breaks drying my hair because I can't manage to hold the hairdryer for more than a minute or two.

I have been diagnosed with ADD, but that could easily be the 'brain fog' that people talk about, or maybe it is ADD. Who knows?!

I get all my bloods done at least once a year, and they are always normal.

Sorry for long post.

As I said, I don't expect or want a diagnosis, just opinions.
What impression do you guys get from what I've said?

premierlass

http://www.fightingfatigue.org/?p=8189

That is one person's take on distinguishing M.E. pain and Fibro pain. Bear in mind that it is one person's experience and everyone's is different.

http://www.co-cure.org/cccd1.htm

The Canadian Clinical definition of M.E. It is the most specific and rigorous and the one preferred by most M.E. sufferers.

http://www.hfme.org/methemedicalfacts.htm

More medical facts about M.E.

Honestly, though, if you do get a diagnosis of Fibro and you believe you have M.E. I wouldn't fight it.

1. You will have a diagnosis. It's extremely difficult to get a diagnosis of M.E., which leads to -
2. You will get treatment.
3. Many doctors think Fibro and M.E. are the same thing so you won't be prevented from seeking treatment of symptoms that may be specific to M.E.
4. You are unlikely to be prescribed anything which may harm your health. This is not the case with M.E.

flutterflye

Thank you premierlass for both your replies to me.
They have been helpful, and reassuring.

From everything I have read from both medical websites and from reading the experiences of others, and also speaking with doctors about it, it all seems so complicated!

With most illnesses, conditions, or disorders, symptoms can present in many different ways from person to person, but fibro and me seem to take the biscuit!

I'm sure you all have experienced what I'm feeling right now - years of doctors visits, trying every suggestion offered by others, and trying any idea that comes to mind.
Just to find that yet again, nothing helps.

And I just stumbled upon fibro and me one day about two months ago, and the more I read, the more I felt like for once, maybe this is the answer.
But while all my issues completely correspond with fibro/me, I am hesitant to consider it as potential explanation due to past disappointment if you know what I mean?

Sorry, I'm rambling!
I just want an answer, so then I will know what I'm dealing with.

Anyway, apologies for rattling on,
And thanks again

premierlass

No problem. But I definitely know how you feel. One thing I would suggest as a coping/lifestyle strategy (this is not medical advice) is pacing. It simply means reducing your normal activity/work by 50%-75%, slowing things down, resting regularly etc. It's acknowledging that 1. your capacity for stress and activity is vastly reduced and 2. everything you do is going to deplete your energy and require increased recovery time. This will help you learn your boundaries and not push yourself beyond them and adjust to the limitations your various symptoms impose.

Also, find things that help you relax and take time out to do whatever it is. I find I get incredibly wound up just trying to get by, and stress is a killer with Fibro/M.E.

I think you're probably coming close to an answer on this, and it will be a relief just to know.

star-pants

premierlass wrote: »

But I definitely know how you feel. One thing I would suggest as a coping/lifestyle strategy (this is not medical advice) is pacing.

+1 (to all you said really)
It can really be about managing yourself, knowing your limits, knowing what days not to push those limits. Recognising early signs of a flare up, knowing what will definitely cause a flare up.
Stress is a big factor too, my mother has RA but she has fibro in her chest and when she's stressed the pain in her chest can be really debilitating.
Sleep and rest can be big factors in keeping pain at bay, I don't sleep much so my body doesn't 'heal' itself which is why you can wake up like someone ran over you with a truck!

Everyone needs to find their own harmony, what does and doesn't work for them, but even something small that you find is a step towards helping yourself.

2nd Girl

Hi,

I'm new to this website so forgive me if I'm posting in the wrong place etc. I have been told by a rheumatologist that I have fibromyalgia. He said I had a mild case of it but after waiting for 2 months for the appointment to go see him I had gotten a lot better. Unfortunately now it's getting worse again and I really don't know how to deal with it. It still really isn't that bad right now but it's enough that I'm not sleeping much at all, and I have a constant ache in my neck and back and oddly in the balls of my feet...makes it fun to walk Also my vision is really blurred, some days it's worse than others but very bad today. Does anyone else suffer from this? Today, I'm having a tough time with it, I feel a bit like a baby for going on about it.

I was just wondering if anybody has any current advice or treatment secrets. The specialist told me to exercise, which I am trying to do but the pain is getting in the way a bit. I would go back to see him again but he charges €180 per appointment and he didn't really offer me anything other than to tell me to exercise. I wasn't sure whether to belive his diagnosis to be honest, I had heard that fibro was what they diagnosed as a quick answer..I'd love to believe this is something that will be gone soon. After my initial 6weeks of torture from it I had been better and I thought it was over but the past 10 days have been just like the first 10 days the first time.

I'm probably not making much sense, but I would really appreciate any advice out there..thanks

star-pants

You mind find some helpful posts in this thread I know it started a few years ago but it's still being posted in lately

coco12

Hi 2nd girl,

I've had FM for ages so my sympathies to you. I've pretty much stopped spending a fortune on treatments and I'm holding out for the science!

There is a conference in Tullamore on October 9th which is being attending by some well known scientists and doctors. Have a look on facebook at Hunter Hopkins Clinic and XMRV Global Action. Also Masscfids.org and Prohealth. Almost too much info out there. You are not alone.

Just registered to reply to you but not sure how it works so hope you get this.

I'll be at the conference if you want a chat. Take care of yourself.

Helen

thecelt

Has any one tried anything alternative ? eg accupuncture

Have been having a few rough weeks where i am exhausted.

After doing a day out shopping which involves a 100 mile round trip,
I need to sleep for about 12 hours,
not the most restful sleep,
but after that time i manage to drag myself out of bed!

Zubes007

Hi There Helen,


I am with you on the science bit! How long is it going to take before the Neurological Link is recognised for what it is! So sick of being told its a depressive rhemotological disorder! I'm sure most people will eventually be brought down by consistent nagging pain, and worse by how we can be treated by some just because there is not a easily recognised visual symptom of the disorder. Glad to hear about the Confrence in Tullamore in October, went last year and it was like somebody had shone a ray of hope in the darkness gave me back my fight! I was diagnosed 4 years ago, my Mother has it too! I have tried many of the usual treatments including Meds with some possitive effect for short periods! Thanks for the info on sites with scientific research I will have a good read later.
Take Care
Zoe

Zubes007

Hi There,

So sorry to hear you are having a retched time, The flair ups really take their time to pass sometimes! I have tried a very gentle exercise regime Yoga with plenty of very very gentle stretching exercises. Found after some time I was less still and a little less pain ridden. I have to admit to being a needle phobe so have not gone down that route yet! Need to muster up some courage. Diet is another area that i have looked at and found improvements in the many symptoms Fibro presents including the dreaded Fibrofog! I cut out Caffine, Lactose, and am battling to cut down on Bread and pasta which I love failing miserably at the mo! But you have to have a little of what you love. Extra Suppliments such as Vegepa which contains the old Omega 3 and 6 and a high dose of full spectrum B vits will help with the dreaded Fatigue but will take time to work!

The Confrence in Tullamore on the 9th October is run by the Midlands FMS and ME support group and really is well worth the trip.
Take Care of yourself and maybe I'll see you at the Confrence.

Zoe

thecelt

I am looking into trying to lessen my caffeine and sugar intake,
as when i am in agony i find myself knocking back hot sugary mugs of coffee.

I have just been trying to look into possible vitamins to take,
I take berrocca boost often enough as they seem to at least give my immune system a boost,

I have seen a lot of studies mentioning B12 and S-adenosylmethionine (SAM or SAM-e)

The pain is bad, but at least being off the amitriptyline, at least i am functional,
it used to have me knocked out by 9 most nights and was even foggier still then next day.

star-pants

I don't really take much caffeine, I would have 2-3 cups of tea a day (generally 2 these days), no sugar. I don't like coffee at all and would have a soft/fizzy drink maybe once a week, sometimes longer.

I can't seem to stomach multivitamins, I've tried a few different ones and they just upset my stomach for godknowswhy. Can't drink those effervescent vitamin things either, again upsets my stomach (stupid stomach).

I've seen the B12 vitamin mentioned too. I guess there's no harm trying different things if they're ok to take / if you're on meds.

Re: Acupuncture, I know some people find it helps. My mother has RA and she tried it but the doctor actually said to her after a few sessions that he could see it wasn't having any effect and didn't want her wasting any more money. My dad has back / shoulder pain and he found it helped a bit.

As things have been getting worse again lately, I spoke to my doctor who has suggested cymbalta ... I'm just reluctant so I'm 'thinking about it'.
Not sure how it would affect me.


Just curious, has anyone had jaw pain? I've never really had it before, except after a long stretch at the dentist. But the last couple of weeks I've gotten this really bad pain in my jaws and it's weird, I don't know why.

thecelt

Not had any jaw pain yet!
Sounds crappy

QuiteInterestin

I have never been diagnosed with Fibromyalgia, however I have had pain in a good few of my joints over the last few years. I've done the orthopaedic/physio route and I did attend a rheumatologist who ruled out fibromyalgia, however she did tell me I was hypermobile. Unfortunately, pain has developed in a few more joints since I attended her so and at my last GP visit, my GP mentioned fibromylagia as a possibility and to consider attending the rheumatologist again as things have changed since my last visit.

star-pants wrote: »

Just curious, has anyone had jaw pain? I've never really had it before, except after a long stretch at the dentist. But the last couple of weeks I've gotten this really bad pain in my jaws and it's weird, I don't know why.

I too get jaw pain ( I have problems with my TMJ joint and have to wear a night splint) so I know how weird it is (it never occured to me there was a joint in my face until it started giving bother). Mine goes into my temples and ears as well and the muscles in my face get really stiff and tight so it difficult to open my mouth fully (just had a bad flare up after a throat/wisdom teeth infection - had a thread going on over in the dental forum). I find a heat pack (you know the wheat filled ones you can get in chemists) good for jaw pain. You can heat them in the microwave and hold them against you face for 10mins, I find it soothes and loosens out the muscles in my face. You can even lie on them in bed if you find that easier!

Yapamillias

Out of curiousity has anybody tried WBC (Whole body cryotherapy), its been mentioned in journals

2000: http://www.ncbi.nlm.nih.gov/pubmed/10832164

2007: http://www.springerlink.com/content/1271314042w8405g/
(Secondary references the benefits of cyrotherapy)

As most of the research states it gives short term benefits whereby much more intensive physio can be administered which will have more lasting effects.

diddleyland

I was diagnosed just over 2 years ago I had gotten to the stage where the pain was so bad i struggled to walk. I couldn't even lift my son and he was only 2 at the time. the jaw pain was cruel and it caused nerve pain in my neck also. Once I got the diagnosis it helped to have a name for and I was able to then make a plan to get thru this. I started by walking for even 5 minutes then built it up over time and found the more exercise i did the better i felt. I now run 3-4 times per week and will be doing the dublin marathon on oct 31st. i find running particularly good as a pain killer(although i'm never pain free) and it keeps the fibro fog at bay also. i still have flares but they are usually mild enough once i keep running.

notcrazy

I agree diddleyland re the exercise it does really help but you have to find the one that suits you. Swimming is good and you can be as strenuous or as relaxed as you want. I find that I can't run as the pain in my chest gets so bad after even 1 minute of running that I can't take it.I do the walk run run programme on the treadmill and I can tolerate that for about 30 mins, also gentle pilates is good but not full on pilates.
I have also been diagnosed with severe cluster headaches and chronic daily migraine so that accounts for a lot of my pain in the head area. Now that I have received treatment for that I feel much more positive. The first neurologist that I saw told me I was depressed and treated me like a nut the second opinion I sought was brilliant and I feel much better now psychologically and that helps physically.
I also have GERD which is a pain but you can sort that out quickly enough with meds

keep the faith fellow sufferers we will get there

daisymae

Hi
I'm new here! It's been helpful reading all your posts, Thank You.

I'm just wondering if anyone has problems with their feet? Im finding it impossible to get comfortable shoes for work or for anytime, as my feet are paining me constantly. I have pain in my legs, arms, back and hands not to mention the burning across the back of my neck and both arms, but the feet are the worst at the moment.

QuiteInterestin

Just wondering if anyone on here knew how long it takes to see a Rheumatologist in the public system. Being referred on to see one as the orthopaedic clinic/physio I've been attending can do no more for me as its not an orthopaedic problem. Any ideas?

notcrazy

It would all depend on your area and how your GP refers you. To be honest as most doctors don't even recognise it you could be waiting I went the private route so it was only a few weeks from initial GP consult to diagnosis by consultant but as GP doesn't recognise the condition that doesn't really make any difference!
Rheumatologists have long lists in general and the guy I saw made a diagnosis but has no intention of following it up he just said that's what it is now off you go and do some exercise thanks for the cash!

hope you get sorted soon

StinkySocs

Hi All,

I have RA for 9 years, since I turned 20. In the last 6 months I've been diagonsed with Fibromyalgia and now a new thing, well I've never heard of it before now, called Costochondritis.

The Fibro & Costo always flare up a few days after I'm stressed...I think I've got away with it...then BOOM, knocked out for days.

I see a lot of ppl are on meds for the Fibro, I wasn't offered any, just steroids for a week or two.

I was trying to cut out caffine so tried Green tea, and kept having massive flare ups, took me ages to figure it out!

As for the fatigue, I heard of this yoga place in Westport, now I haven't gone but a friend of mine had cronic fatigue, and she went to this place for a week, and was a totally different person. I thinks it's quite expensive but it includes food, accomodation, and yoga and massages.
I'm thinking about going in the new year.

If you are looking for more information on how to deal with Fibro, Arthritis Ireland run a really good course for Living With Arthritis, but they also cover Fibromyalgia. And provide a book about it called The Arthritis Helpbook. Some of the case studies in it are hilarious but the information behind them is very good.
I went to one for people aged between 18 and 35 and it's really good for tips and how other people feel and how they got over it. Lots of people had young kids, and/or working full time. One person had a horrible time explaining it to his family and friends, so coming into a group like this was really good, he was able to get it all off his chest.

Anyway, hope this helped someone, sorry it's all a bit random. If you want to PM me, feel free, and best of luck to ye all!