Fibromyalgia. Who to go to?

dsg

Can anyone point me in the direction of a doctor that actually believes this exists and won't fob me off onto a mental health professional. No advice needed just contact details and maybe a quick synopsis of how you ended up there.

Firetrap

Can you give us the general area where you live? That might narrow things down a bit if there are people who want to PM you

star-pants

My fibromyalgia was diagnosed by the Rheumatology department in Vincents Hospital (dublin) and they just discharged me as it's not under their branch apparently.
My GP has given me medication to help which it has, and I'm considering asking him to refer me to Tallaght Rheumatology incase they can actually help out any.

dsg

I'm willing to go anywhere to be honest. I've health insurance and i'm prepared to use it! That's how bad this is now. I will literally go anywhere in the country, actually i'd travel abroad if i thought it'd help my situation. I'm going to see my doctor on friday and i've a list of both my symptoms and some questions for him. I don't want to forget anything or get sidetracked while i'm in with him for the allotted two minutes he seems to allow each patient! I've received a few recommendations for different doctors and clinics via PM but if anyone can suggest anything in particular i should mention then by all means please let me know.

littlebug

Have you seen this clinic dsg? http://www.fibromyalgiaprogramme.com/

I was diagnosed by a rheumatologist in Galway last year.

Splendour

Hi dsg,

tried to pm you with name of a Doc in Stillorgan but couldn't. If you contact me, I'll give you a name and number-am not sure if we can post that info here.
Meanwhile check out this site stopthethyroidmadness.com It's an absolute eye opener to M.E./CFS/Fibromyalgia etc...

dsg

Splendour have tried PMing you but doesn't seem to be working. System glitch? You keep trying and so will i.

Splendour

dsg wrote: »

Splendour have tried PMing you but doesn't seem to be working. System glitch? You keep trying and so will i.

Will do dsg

LegacyUser

dsg,

I'd like to help, but this information may or may not be of use to you.

There is a female GP in Passage West, Cork who specialises in helping people with fibromyalgia. Sorry to be so vague, i dont have her number, but she helped a friend of my mother who was in a bad way 6 months ago, could hardly walk, headaches etc - had all the fibromyalgia symptoms, she is so much improved today - she travelled every week (or fornight, i forget) for 3 months, now its once a month. She deals with diet, supplements etc.

imokyrok

I see Dr. Geraldine McCarthy (rheumatology) in the Mater and find her good. Overall doctors in Ireland tend to be very conservative and I find I need to be the one to keep up with the latest information from the US. My local GP will usually agree to try different treatments if I bring in some medical papers from the net.

I saw a female rheumatologist in the Bons Secour in Tralee some years ago and she was very good. She had worked in FMS in Australia for some years. It was too far for me to travel on an ongoing basis but I had a week inpatient saty at the time and found it helpful. I just can't think of her name right now though.

I believe Dr. Frances Stafford in the Blackrock Clinic is experienced with FMS also. I think most rheumatologists are fairly au fait with the condition now (there is a certain male rheumy who wrote a book and thinks he's an expert but he is totally outdated , very unsympathetic and I'd avoid him like the plague!)

vjoc

This is an Irish author "Dr Michael Kelly " - thinks he's in Vincents.

His book is very contraversial however ......

http://www.imet.ie/imet_website/snippets/1st_feb_2005_snippets.html

http://www.imet.ie/snippets2.htm

http://www.irishhealth.com/discussion/message.html?dis=4&topic=3801

imokyrok

vjoc wrote: »

This is an Irish author "Dr Michael Kelly " - thinks he's in Vincents.

His book is very contraversial however ......

http://www.imet.ie/imet_website/snippets/1st_feb_2005_snippets.html

http://www.imet.ie/snippets2.htm

http://www.irishhealth.com/discussion/message.html?dis=4&topic=3801

Yep - he was the one I was saying to avoid.

kangaroo

imokyrok wrote: »

Yep - he was the one I was saying to avoid.

He passed away last year. I heard a lot of people with ME/CFS and/or FMS complain about him over the years.

kangaroo

imokyrok wrote: »

I see Dr. Geraldine McCarthy (rheumatology) in the Mater and find her good.

She's very into exercise so if you don't feel you can do a lot of exercise (e.g. some people with ME/CFS have fibromyalgia-type symptoms), she might not suit.

In Modern Medicine of Ireland (Vol 30, Number 9, September 2000), amongst other things she said: "the key element in the active management of FM is for the patient to become aerobically conditioned. This usually has to happen gradually, often over many months, and should ideally ultimately be performed 6 days a week for 20 minutes past the point of sweating"

imokyrok

kangaroo wrote: »

She's very into exercise so if you don't feel you can do a lot of exercise (e.g. some people with ME/CFS have fibromyalgia-type symptoms), she might not suit.

In Modern Medicine of Ireland (Vol 30, Number 9, September 2000), amongst other things she said: "the key element in the active management of FM is for the patient to become aerobically conditioned. This usually has to happen gradually, often over many months, and should ideally ultimately be performed 6 days a week for 20 minutes past the point of sweating"

yeah thats definitely more for Fibro. It can be a problem with ME. I did the pain managment course in the mater. When I went in I had severe difficulty climbing stairs and my mobility had gone from using stick, to a walking frame, to a mobility scooter! Thanks to the couse I finally got to grips with how to build a walking programme from where I was at. I started at 5 mins and added on 10% a week. It was critical not to go over the 10%. Gradually over many months I worked up to 30 mins. Now sticks,walking frame and scooter are consigned to the shed. And I can run up a flight of stairs when I have to. I don't work up a sweat though but try to walk briskly and I have to say my pain and quality of life is much improved compared to previously.

free_rein

Hi, I'm sorry to hear.. My younger brother has suffered with FMS symptoms for three years and went to a countless number of doctors and specialists. None could grant him with a solid diagnosis. After much pain and stress on my Mother's part, she finally sought out a Doctor in Passage in Cork who deals especially with FMS sufferers. My brother has been visiting her clinic every fortnight for the past six months and I definitely see improvement in him.

Dr. Downes has reworked his diet and he takes supplements too. He has also benefited from sessions of kanisiology from a separate person. Some people might not "believe" in this but if you don't have a positive atttude about healing, then you will make it difficult for yourself to do just that. I really think that if you try to rework your attitude in the recovery of these "illnesses," that you will get better sooner. My bro was extemely negative at the beginning in finding out about the FMS. Of course this is understandable as he was so angry and hurt. Especially since he couldn't play sport anymore as he was just in too much pain. I have continually tried to be positive with him and he has gradually become more positive and thus, much better.

If you are interested in the doctor visit the site;

http://www.fibromyalgiaprogramme.com/treatment.html

If you want to know anything else PM me and I will try and help you as best I can as I am very close to my brother and I have some understanding about it all...

imokyrok

Ok this is going to sound snippy and I don't mean it to be but I would have to advise anyone thinking of 'alternative' treatment to spend some time looking up the clinical evidence for that treatment first. In the 90's I spent thousands on every alternative treatment available - I'm talking five acupuncturists, kinesology, homeopathy, relexology, reiki, chinese medicine - you name it. I spent years going to these people because nobody could tell me what was wrong or offer any help. Often I would be convinced that a treatment was working only to relapse a few weeks or months down the line. I now know that the improvements were simply a combination of placebo and the natural ups and downs of FMS.

With the advent of the internet it is possible to get access to any number of peer reviewed clinical trials of every treatment under the sun - so don't waste money and risk the psychological torture of having your hopes raised again and again only to be dashed. Check it out first! Don't be taken in by the snake oil merchants and those who are too misguided to do the basic research into whatever 'therapy' they believe in. Can I also say that if anyone dares to tell you that you are not getting better because you don't believe in yourself or don't really want to get better tell them to go f*ck themself from a great height. The last person who said that to me was trying to sell me "angel therapy" - I ask you! Oh and free_vein you might want to rethink putting the word illnesses in inverted commas - not nice!

LegacyUser

Well said. Those inverted commas really annoyed me! There are enough ignorant people out there. For someone who has seen somebody very close to them suffer so much, thats an attitude that he can probably do without! People dont generally want to be in serious pain!!!
Thankfully he has improved in spite of this

squeky

Dr. O'Keeffe in St. Vincents hospital in dublin i find him very good, He truly reconises your pain as a disease and he is fighting for it to be rocognised..

imokyrok

squeky wrote: »

Dr. O'Keeffe in St. Vincents hospital in dublin i find him very good, He truly reconises your pain as a disease and he is fighting for it to be rocognised..

Thanks for that information. I recently had a horrible experience with a registrar at my usual bi-annual rheumatology checkup at the Mater who was extremely dismissive and told me it was "pointless" for me to keep attending. This was a doctor who had never seen me before, didn't ask a single question about my symptoms or medical history and didn't examine me in any way so I'm in the mood for trying a different hospital. I hate seeing those registrars who change every six months - they are nearly always clueless and there's no continuity of care but getting to see the consultant instead is hit and miss. I have to say though the w**ker I saw recently was truely the worst I've come across - and I've seen dozens of doctors over the 15 years I've had fibromyalgia. Is it necessary to go private to see Dr. O'Keefe or can he been seen through the public system?

Hi, Im in Lucan, my Doctor is very good, she refered me to St James where a Consultant diagnosed me. I am taking Lyrica now, hard to take, but seem to be working.

If you would like any more details,please feel free to contact me.


Regards,

Jacqui

star-pants

imokyrok wrote: »

Thanks for that information. I recently had a horrible experience with a registrar at my usual bi-annual rheumatology checkup at the Mater who was extremely dismissive and told me it was "pointless" for me to keep attending. This was a doctor who had never seen me before, didn't ask a single question about my symptoms or medical history and didn't examine me in any way so I'm in the mood for trying a different hospital. I hate seeing those registrars who change every six months - they are nearly always clueless and there's no continuity of care but getting to see the consultant instead is hit and miss.

I would agree there, I reckon I've had symptoms of fibro for about 14 years but I was always told it was growing pains. I had xrays, blood tests, nothing ever showed up. Then just over a year ago, after going back and forth to the rheumatology clinic in James' for about 5/6months they finally said I had fibro & discharged me saying it wasn't their department. Handed me a booklet on FMS and said to take up exercise. Helpful ....

I had the same issue with a different consultant every time I went in, noone knew my history, one of them even asked me if I could read the writing of the previous person cuz they couldn't!!

Jake1 wrote: »

Hi, Im in Lucan, my Doctor is very good, she refered me to St James where a Consultant diagnosed me. I am taking Lyrica now, hard to take, but seem to be working.

My mother has rheumatoid arthritis for over 25 years now, and she's had a touch of fibro in her chest the past...5/6 years. She's on lyrica for that which is hard to take, but does help. Only thing is watch out for that eye side-effect.

star-pants

star-pants wrote: »

I would agree there, I reckon I've had symptoms of fibro for about 14 years but I was always told it was growing pains. I had xrays, blood tests, nothing ever showed up. Then just over a year ago, after going back and forth to the rheumatology clinic in James' for about 5/6months they finally said I had fibro & discharged me saying it wasn't their department. Handed me a booklet on FMS and said to take up exercise. Helpful ....

I had the same issue with a different consultant every time I went in, noone knew my history, one of them even asked me if I could read the writing of the previous person cuz they couldn't!!



My mother has rheumatoid arthritis for over 25 years now, and she's had a touch of fibro in her chest the past...5/6 years. She's on lyrica for that which is hard to take, but does help. Only thing is watch out for that eye side-effect.

I havent hear of eye side effects, thats interesting.
I get quite dizzy from the Lyrica, and nauseuous sometimes too.

Jake1

Jake1 wrote: »

I havent hear of eye side effects, thats interesting.
I get quite dizzy from the Lyrica, and nauseuous sometimes too.

or maybe you mean the puffy eyes in the morning ?
That I DO suffer from. its awful. I look like ive spent the night crying.

star-pants

I'm not sure exactly - I know my mother's eyes get reaaaaaaally itchy and she has drops for them, and something about them (doc) checking that her retinas aren't detaching (being a side effect).

Yes dizziness & nausea are other side effects, they do ease a bit after a while. My mother's not as dizzy on them anymore.

P.A.C

Hiya, i would like to second Dr O Keefe. Iv been attending his pain managment clinic in vincents for 7 years. I find him realy nice. I have tryed everything i havent been able to work for years and i have 4 kids so its realy tough. He has various tretmants to try and medication. He does a 3 week pain managment course, were you attened every day and they teach you exercises, time managment, relaxation.
Whats realy the worst thing is knowing there is no cure, and you just have to
try manage the pain as best as you can, either with meds or treatment.
God i cant even remember a day that i was pain free or totaly whiped out.
Id love to have energy to play with the kids and take them on days out.
Sorry to be so negative just having a ****ty time at the mo.

Missmindiloo

Hi there,

Being a sufferer since I was 16 and I have tried every tablet possible to help try and relieve pains and help promote sleep. After spending 1000's on tablets I was put onto Dr Downes. She is the most amazing doctor and person I have ever met she understands listens and genuinely helps you she got me from being a girl who could not walk or use my arms to a girl who now is a physical therapist. Words cannot describe how much I admire her and her effort in helping people with FM.

I am virtually pain free but flare up sometimes but its mainly good days now

Also, if you are suffering from headaches and maybe clicking in your jaw when you eat perhaps you should get your TMJ joint checked its the joint that opens and closes when you eat You should get it checked not with a normal dentist but by a TMJ specialist mail me if you need numbers.

Mind yourselves and the precious energy ye have
xx

imokyrok

I've heard good things about Dr. Downes over the internet and have spoken to her secretary but the distance and expense are an issue. I did get information from her clinic and was a bit put of by some of what I read which if memory serves me right was about some sort of hands on "healing" technique.

I've become very skeptical of doctors who promote alternative therapys which have no clinical evidence whatsoever to support their efficacy.I expect better from those who have training in scientific methodology. One medical doctor I saw recently in Dublin at considerable expense who describes himself as a fibro expert was suggesting myers cocktail infusions which are pure quackery and very expensive. I'd be interested in hearing more about other people experiences of Dr. Downes either here or by pm.

I've been speaking to a lot of fibro people of late as I've recently joined a fibro support group and everyone seems to think highly of Dr O Keefe so I'm definitely going to try seeing him.

P.A.C

Hi all, im going for trigger point injections tommorw through dr okeefe. I hate getting these as they are so painfull but it has to be done. I atteneded a gyne today to see if i have a prolaped womb that may be cause the sevre lower back pain. This does not see like fibro pain iv had it since december but it turns out iv only a slight prolapes so the pain isnt from that.
Iv also recently been getting the clicking and pain in my jaw, can dr okeefe deal with that or do i need to see yet anothe specialist.

Just wondering has anyone got other problems that sometimes go hand in hand with fibro, like thyriod. I bloody seem to have everything. Im fed up with hospitals, specialists, blood tests, procedures, medication. Iv to have a colonoscapy in 2 weeks and the other 1 down the throat cant remember the name.

Sorry for being so negative and moany!!!! Hopfully in a cople of weeks il have another diagnosis and will start feeling better.

imokyrok

P.A.C wrote: »

Hi all, im going for trigger point injections tommorw through dr okeefe. I hate getting these as they are so painfull but it has to be done. I atteneded a gyne today to see if i have a prolaped womb that may be cause the sevre lower back pain. This does not see like fibro pain iv had it since december but it turns out iv only a slight prolapes so the pain isnt from that.
Iv also recently been getting the clicking and pain in my jaw, can dr okeefe deal with that or do i need to see yet anothe specialist.

Just wondering has anyone got other problems that sometimes go hand in hand with fibro, like thyriod. I bloody seem to have everything. Im fed up with hospitals, specialists, blood tests, procedures, medication. Iv to have a colonoscapy in 2 weeks and the other 1 down the throat cant remember the name.

Sorry for being so negative and moany!!!! Hopfully in a cople of weeks il have another diagnosis and will start feeling better.

Yep - I've had a couple of those too and yes I have the various conditions that tend to go along with fibro - IBS, Irritable Bladder, intractable migraine, sleep disorder to mention the main problems, And then there's a whole host of minor complaints as well. That's the problem with a disorder that effects the central nervous system. It causes so much disruption to the entire body. It's remarkable that we cope with a range of conditions, any one of which generally requires it's own support group and medical specialists and yet our condition is dismissed by so many. So few realise what we cope with so stoically and we get zero credit for it.

On top of that we are persecuted by the likes of Irish Life with a continuous round of stressful assessments which as far as I can see is designed to make us give up our entitlements to disability payments from sheer fatigue!

Moan, moan. Any good news out there I wonder?

Missmindiloo

Hey guys,

Dr Downes is a registered GP also trained in Gynae, Neurobiology and Quantum Physics... I know there is not much on what she does as it is very complicated and those who are interested in getting better will travel and stick with her. Im not sure about Dr O K in Dublin but I can only speak on my experience. It is a long journey money etc but if you want to get your life back trust me she is the only way to go

franann

hi Folks,
I have under active thyroid .high BP, Fatigue , aches and pains, anaemia, Had severe lower back pain and collapsed at Easter, hospitalised for one week. Got Bell's Palsy in '97.I haven't got FM( which I thought I had) , I've Lyme disease.!.Tests have been always NEG. in Ireland, so I went abroad to be Diagnosed.
I'm writing here because the Symptoms of .FM, ME .CFS, are so similar to Lyme disease. Please whatever you all do, be properly Diagnosed. It was 8 years before I got a Diagnosed, to my cost.

imokyrok

franann wrote: »

hi Folks,
I have under active thyroid .high BP, Fatigue , aches and pains, anaemia, Had severe lower back pain and collapsed at Easter, hospitalised for one week. Got Bell's Palsy in '97.I haven't got FM( which I thought I had) , I've Lyme disease.!.Tests have been always NEG. in Ireland, so I went abroad to be Diagnosed.
I'm writing here because the Symptoms of .FM, ME .CFS, are so similar to Lyme disease. Please whatever you all do, be properly Diagnosed. It was 8 years before I got a Diagnosed, to my cost.

I was told that lyme disease is hardly known in Ireland due to lack of Lyme bearing ticks. Did you contract the disease in Ireland do you think or abroad. I know it's commom enough in the US.

P.A.C

God and i thought i had it bad. They are going to find a cure soon!!!!!!!!!
Well thats my dream anyway. Those bloody trigger point are a waist of time.
Got 2 today and apart from it being agony when getting it done it has made no difference at all. I asked today to be refered to the social worker. Im finding it very hard coping with 4 high spirited boys one who has ADHD/ODD. And the cost of the medication and various vistits to gp, im going to aply for the medical card just for myself. Iv been turned down twice already cause my dh earns over the limit. Jeasus our outgoings are sometimes more than the blooding income most months. Hope everyone fells a bit better soon.

franann

Reply to Imokyrok,
I got bitten in the states in '95. Not diagnosed properly 'til 2003..After lonely years trying to find out what was happening to me, we bought a Computer in 2002 and my kids gave me a crash course .I joined "Eurolyme" then and discovered that there are many people in Gt. Britian and Ireland who have Lyme disease.Some got bitten abroad, but, many did here in Ireland. I know Irish people who got bitten in Donegal(Playing golf) Galway ,Kerry and just recently someone got bitten at an Easter Egg hunt in the S.E.. Wasn't he lucky he went to my GP who new something about Lyme and decided to treat him Promptly.Dr. Jeremy Gray has done research to prove that THESE ticks are in many places in Ireland
I never had Positive tests here, so you can imagine the battle with many Drs.I know they cannot be expected to know everything ,but, with Bell's Palsy,Bull's eye rash, and many other Rashes and my trip to the states, I thought it would be easy to diagnose.
Please get a 2nd or 3rd opinion if your not happy
.

Peggypeg

imokyrok wrote: »

Ok this is going to sound snippy and I don't mean it to be but I would have to advise anyone thinking of 'alternative' treatment to spend some time looking up the clinical evidence for that treatment first. In the 90's I spent thousands on every alternative treatment available - I'm talking five acupuncturists, kinesology, homeopathy, relexology, reiki, chinese medicine - you name it. I spent years going to these people because nobody could tell me what was wrong or offer any help. Often I would be convinced that a treatment was working only to relapse a few weeks or months down the line. I now know that the improvements were simply a combination of placebo and the natural ups and downs of FMS.

With the advent of the internet it is possible to get access to any number of peer reviewed clinical trials of every treatment under the sun - so don't waste money and risk the psychological torture of having your hopes raised again and again only to be dashed. Check it out first! Don't be taken in by the snake oil merchants and those who are too misguided to do the basic research into whatever 'therapy' they believe in. Can I also say that if anyone dares to tell you that you are not getting better because you don't believe in yourself or don't really want to get better tell them to go f*ck themself from a great height. The last person who said that to me was trying to sell me "angel therapy" - I ask you! Oh and free_vein you might want to rethink putting the word illnesses in inverted commas - not nice!

Ha Ha I second this completely. I have a friend who believes in "the secret" and basically how nothing happens to us that we don't ask for and how if you're negative then you bring things on yourself, thinking that very nearly made him lose a friend. I have to tell you, it's like telling a rape victim it's their fault, completely hurtful and useless and just plain WRONG!!! If you're sick you need support not a reason (albeit an incorrect one) to hate yourself. Hugs to you imokyrok!!!

LegacyUser

kangaroo wrote: »

She's very into exercise so if you don't feel you can do a lot of exercise (e.g. some people with ME/CFS have fibromyalgia-type symptoms), she might not suit.

this is about fibro and as you can see it does respond to exercise

LegacyUser

Missmindiloo wrote: »

Hey guys,

Dr Downes is a registered GP also trained in Gynae, Neurobiology and Quantum Physics... I know there is not much on what she does as it is very complicated and those who are interested in getting better will travel and stick with her. Im not sure about Dr O K in Dublin but I can only speak on my experience. It is a long journey money etc but if you want to get your life back trust me she is the only way to go

quantam physics?

kangaroo

:
Originally Posted by kangaroo
She's very into exercise so if you don't feel you can do a lot of exercise (e.g. some people with ME/CFS have fibromyalgia-type symptoms), she might not suit.

this is about fibro and as you can see it does respond to exercise

Some people responding to exercise doesn't mean everyone will.

I think Fibromyalgia is likely to be a heterogeneous condition and in particular the group of people diagnosed with Fibromyalgia in Ireland is likely to be heterogeneous and that not all will respond positively to the sort of advice she gave in the Modern Medicine of Ireland 2000 article she wrote (for example).

Sample research study below:

"On the basis of per protocol analyses conducted at 20-week follow-up, the addition of a brief pool-based exercise and patient education programme to usual care does not offer superior benefit. The level of attrition in this study, however, limits more definitive conclusion from the current results."

http://www.rtrs.org/assets/PTR_abstracts.pdf

Effectiveness of a combined pool-based exercise and education programme compared to usual medical care in fibromyalgia syndrome: a randomised, controlled trial

J.G. McVeigh1, D.A. Hurley2, J.R. Basford3, J. Sim4, D. Baxter5 and M.B. Finch6

1Health and Rehabilitation Sciences Research Institute, University of Ulster, Belfast, UK
2School of Physiotherapy and Performance Science, University College Dublin, Dublin, Ireland
3Department of Physical Medicine and Rehabilitation, Mayo Clinic College of Medicine, Minnesota, USA
4Primary Care Sciences Research Centre, Keele University, Staffordshire, UK
5New Zealand Centre for Physiotherapy Research, University of Otago, Otago, New Zealand
6Department of Rehabilitation Medicine, Royal Hospitals Trust, Belfast, UK


Fibromyalgia syndrome (FMS) is a chronic muscular pain syndrome, whose optimal management remains problematic.1 The aim of this work was to determine the effectiveness of a 6-week combined pool-based exercise and education programme plus usual medical care versus usual medical care in the treatment of FMS. Following ethical approval, a sample of convenience of 86 women (mean [SD] age 49.6 years [8.4]) with FMS were recruited. Participants were randomly allocated to 'usual medical care' (n = 44) or a 6-week pool-based exercise and education programme (n = 42). Outcome measures included: the fibromyalgia impact questionnaire (FIQ), tender point count, total myalgic score, the euroqol health status questionnaire, the McGill pain questionnaire, the arthritis impact measurement scales 2 (AIMS2), the self-efficacy for managing chronic disease 6-item scale and the 6-min walk test. Participants were assessed at baseline and at approximately 8 weeks (52/86, 60%), 20 weeks (44/86, 51%). Data were collected by the same researcher at each time point. Attrition rates were similar for both groups. Between-group comparisons were performed with repeated measures analysis of covariance.

Only a per protocol analysis is presented, protocol adherence for the intervention group (set at 50% of the intervention) was 71.4%.

Both groups were similar at baseline. At 8 weeks, mean (SD) FIQ scores were 76.0 (17.5) for the intervention group and 74.0 (20.3) for the usual care group. At 20 weeks, the corresponding values were 73.8 (23.5) and 76.8 (20.9). Repeated measures ANCOVA found no significant difference between groups across these time points for any outcome measure.

On the basis of per protocol analyses conducted at 20-week follow-up, the addition of a brief pool-based exercise and patient education programme to usual care does not offer superior benefit. The level of attrition in this study, however, limits more definitive conclusion from the current results.

Acknowledgement
Financial support was from a Chartered Society of Physiotherapy Research
Foundation Project Grant, Fibromyalgia Support Group Northern Ireland.

Reference

1 Sim J, Adams N. Systematic review of randomised controlled trials of pharmacological interventions for fibromyalgia. Clin J Pain 2002;18:324-36

LegacyUser

kangaroo wrote: »

Some people responding to exercise doesn't mean everyone will.

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the fact that some do is important for people who have fibro. This thread is about fibro not ME. Exercise can help

kangaroo

Unregistered wrote: »

the fact that some do is important for people who have fibro.

And the fact that some do not is also important.

There can be consequences of people including doctors being forthright on this issue. For example, I knew one woman with Fibromyalgia who was getting help with aids and adaptations to her house as well as the looking for some hours of home help from the health board. It was all going well and suddenly it came to a halt. She looked into it and it turned out that a consultant had written "don't make her too comfortable".

Another area that can be affected is applying for disability payments.

LegacyUser

kangaroo wrote: »

And the fact that some do not is also important.

i never said it wasn't but you appear to be all against exercise in every case. Exercie helps some.That is a fact And this thread is about fibro not ME

kangaroo

Unregistered wrote: »

i never said it wasn't but you appear to be all against exercise in every case.

I never said that.
People can check. Before you posted "in your face" messages in reply to my messages, I hadn't said that much on this thread so it's not hard to check.

But I do believe exercise should be prescribed to people with a diagnosis of Fibromyalgia with as much caution as one would drugs and with more caution than one when suggesting to a healthy person they should exercise more.

Unregistered wrote: »

And this thread is about fibro not ME

You can keep saying this (three messages in reply to me, three times saying it) but people can see that I have posted some factual information about Fibromyalgia and Dr MacCarthy.

I have a first degree relative with Fibromyalgia. I have read bits and pieces of the research literature on Fibromyalgia over the years. For the first few years of my illness (ME), my main symptoms were Fibromyalgic and if I'd gone to a doctor today with those symptoms I would likely have been diagnosed with Fibromyalgia (advice from physios and orthopaedic surgeons to treat my muscle pains, etc with exercise ruined my health and I have been housebound for over a decade). I have talked to quite a few people with a diagnosis of Fibromyalgia over the years including some who can exercise. I have talked to people about appointments they had with many rheumatologists in Ireland and have some knowledge of the personalities out there. So I feel I'm entitled to give my tuppence worth. People are free to ignore it.

But, and this may annoy you, you have reminded me of something somebody with ME said to me last year. They had gone to the pain management course with Dr O'Keeffe. She said she had ME. He said to her "ME means nothing, you have Fibromyalgia". But generally I don't recall people saying bad things about him and I know one woman who has been praising him for a number of years.

LegacyUser

kangaroo wrote: »

I never said that.

good cos some do benefit from exercise with caution

imokyrok

I have to say I agree exercise is essential for managing fibromyalgia. I went from using a rollator and mobility scooter to being able to walk unaided for half a hour daily by careful gradual increase. Here's how I was taught to do it for anyone interested:

In the first week walk for whatever period you can until it hurts too much. Measure the number of minutes each day and average it. In my case I started at six minutes. Then each week increase the amount of walking you do by 10%. Don't go over this no matter how good you feel (the big mistake people with FM make is to try to do to much on their good days). Very gradually you should be able to get up to 30 mins most days of the week.

There will be setbacks especially in the winter but just start the same again and keep going slowly. I'm currently building up after slipping over the winter and am at 20 mins.

I was convinced that I had neurological problems causing my difficulty walking. As well as the pain, my legs felt like I was walking through water - so heavy - and still do when I have to walk for longer than the period I've built up too. I really wouldn't have believed that a gradual walking programme could make the difference it did. It doesn't work miracles. I have a lot of pain every single day and have learned to pace myself very carefully but I can walk and I can climb a stairs which I couldn't do two years ago. And that makes a big difference to my quality of life and ability to participate in daily activities with my children like popping into the local shop.

LegacyUser

if you could provide some names of TMJ specialist that would be great. I've been to some maxoficial surgeons and was told to do nothing with my TMJ, am in alot of pain every day with it.

Missmindiloo wrote: »

Hi there,

Being a sufferer since I was 16 and I have tried every tablet possible to help try and relieve pains and help promote sleep. After spending 1000's on tablets I was put onto Dr Downes. She is the most amazing doctor and person I have ever met she understands listens and genuinely helps you she got me from being a girl who could not walk or use my arms to a girl who now is a physical therapist. Words cannot describe how much I admire her and her effort in helping people with FM.

I am virtually pain free but flare up sometimes but its mainly good days now

Also, if you are suffering from headaches and maybe clicking in your jaw when you eat perhaps you should get your TMJ joint checked its the joint that opens and closes when you eat You should get it checked not with a normal dentist but by a TMJ specialist mail me if you need numbers.

Mind yourselves and the precious energy ye have
xx

Hi there, if you could provide the name of a TMJ specialist that would be great. Tks

LegacyUser

imokyrok wrote: »

I have to say I agree exercise is essential for managing fibromyalgia. I went from using a rollator and mobility scooter to being able to walk unaided for half a hour daily by careful gradual increase. Here's how I was taught to do it for anyone interested:

In the first week walk for whatever period you can until it hurts too much. Measure the number of minutes each day and average it. In my case I started at six minutes. Then each week increase the amount of walking you do by 10%. Don't go over this no matter how good you feel (the big mistake people with FM make is to try to do to much on their good days). Very gradually you should be able to get up to 30 mins most days of the week.

There will be setbacks especially in the winter but just start the same again and keep going slowly. I'm currently building up after slipping over the winter and am at 20 mins.

I was convinced that I had neurological problems causing my difficulty walking. As well as the pain, my legs felt like I was walking through water - so heavy - and still do when I have to walk for longer than the period I've built up too. I really wouldn't have believed that a gradual walking programme could make the difference it did. It doesn't work miracles. I have a lot of pain every single day and have learned to pace myself very carefully but I can walk and I can climb a stairs which I couldn't do two years ago. And that makes a big difference to my quality of life and ability to participate in daily activities with my children like popping into the local shop.

Well done for persisting and confirming exercise has benefits sometimes. Neuromuscular therapy helped me greatly with non FM pain but FM was one of the condition listed as being treatable. See http://en.wikipedia.org/wiki/Neuromuscular_therapy.

Disclaimer This is not medical advice

LegacyUser

Unreg, what part of the country are u in re the TMJ guys??

I'm a boards user, but would prefer to talk about this unreg!

Basically a close relative of mine is out of work at the mo, and I've been helping them look on the internet for conditions that fit the symptoms they have (basically to try and help them put their mind at ease, since they had some really bad thoughts). Symptoms include swelling of the arms and legs, joint pain and stiffness, difficulty swallowing, constipation and diahorrea, severe constant pain (this person pain threshold is quite high), coldness and tingling of the extremeties. I'm almost certain that they have fibromyalgia, but I'm not a doctor. They have severe pain, and this is the worst flare up, having been out of work before for lesser flare ups

Following x rays and mris, there is definately degeneration in their spine, but it should not be causing their pain. They were also diagnosed with chronic pain syndrome by a GP, and put on lyrica (now on the highest dose of them, and still there is quite a bit of pain, as well as the side effects - causes more swelling, and weight gain). They are heading to a rheumatologist in a few months in Cork, so I've a few questions for people. Firstly, how was the condition diagnosed? What sort of tests are involved? Can people get back to work after being out for such a flare up(a major issue for this person)? - last time is was 6 months, but they will be out a year in a two months with no real change. Has anyone any experience of rheumatologists in Cork - what are they like? Cos if I could tell this person that they are thorough, and will find a cause of their pain, or will do something definate about it, it will help, as they are quite worried that after waiting for so long, they will be told to deal with the pain basically and no other treatment given. What sort of treatment is advised - I've seen that exercise is recommended, but is there medications as well?

Any advice on it is welcome - BTW, I'm not someone who has looked up one thing and thought it was this, I've gone through quite a few sites and books and this condition kept popping up as the answer.

imokyrok

Seeker01 wrote: »

Unreg, what part of the country are u in re the TMJ guys??

I'm a boards user, but would prefer to talk about this unreg!

Basically a close relative of mine is out of work at the mo, and I've been helping them look on the internet for conditions that fit the symptoms they have (basically to try and help them put their mind at ease, since they had some really bad thoughts). Symptoms include swelling of the arms and legs, joint pain and stiffness, difficulty swallowing, constipation and diahorrea, severe constant pain (this person pain threshold is quite high), coldness and tingling of the extremeties. I'm almost certain that they have fibromyalgia, but I'm not a doctor. They have severe pain, and this is the worst flare up, having been out of work before for lesser flare ups

Following x rays and mris, there is definately degeneration in their spine, but it should not be causing their pain. They were also diagnosed with chronic pain syndrome by a GP, and put on lyrica (now on the highest dose of them, and still there is quite a bit of pain, as well as the side effects - causes more swelling, and weight gain). They are heading to a rheumatologist in a few months in Cork, so I've a few questions for people. Firstly, how was the condition diagnosed? What sort of tests are involved? Can people get back to work after being out for such a flare up(a major issue for this person)? - last time is was 6 months, but they will be out a year in a two months with no real change. Has anyone any experience of rheumatologists in Cork - what are they like? Cos if I could tell this person that they are thorough, and will find a cause of their pain, or will do something definate about it, it will help, as they are quite worried that after waiting for so long, they will be told to deal with the pain basically and no other treatment given. What sort of treatment is advised - I've seen that exercise is recommended, but is there medications as well?

Any advice on it is welcome - BTW, I'm not someone who has looked up one thing and thought it was this, I've gone through quite a few sites and books and this condition kept popping up as the answer.

The swelling and joint pain would make me wonder if sometyhing else is going on here. With FM the pain tends to be more muscular than joints and inflamation is generally not an issue. However it is possible to have other arthritic conditions going on with FM so only a rheumatologist could really tell I reckon.

I don't know services in Cork but I did travel from Dublin to Tralee to see Dr. Muriel Sodden in Tralees Bons Secours some years ago when I was getting nowhere with pain relief. She took me in for a week and did very thorough testing and helped me get some control. She is still listed for that hospital and as far as I remember it was all covered by VHI. If your relative hasn't got HI and is on a long waiting list then another option might be to pay to see a rheumatologist and once diagnosed ask to be transferred to a public list. If she choses a dr. who works publicly and privately this should be possible without too much difficulty. I did this in Dublin. I originally saw a private rheumalotogist and when finances became a problem she transferred me to the public list.

I'd like to say she will get back to work because I know how much work means to peoples self esteem and identity. About 30% of those with FM are unable to work. A lot will depend on the nature of the work in terms of physical and mental stress. FM like most conditions varies from person to person and peoples reaction to meds also varies. I'm told that about one third have mild symptoms which don't have much effect on lifestyle. Another third have regular flareups which require some adjustment but is manageable and the reamining third will be severely effected.

Medications used are varied. Lyrica is the current prescription of choice but only helps a relatively small percentage. Many people can't tolerate the side effects. Many people benefit from a small dose of amytripline (10mg) as it improves sleep and increases serotonin. However others like myself are completely zombied out by such meds. Cymbalta is another newer medcation which helps some and I'm hearing goods things about milnacipran which is not available in ireland yet (although manufactured here!).

Most people with FM get some measure of pain relief from Zydol (Tramadol). I take the maximum allowed dose per day together with solpadeine and it does help. Other symptoms like digestive problems will need to be medicated for separately. Some people find dietary changes help.

Getting on top of sleep is also crucial. Stilnoct gets me off to sleep at night. I've had a sleep study done and like many people with FM I don't go into deep sleep but I try to compensate by getting as much sleep as possible even if it is poor quality. I aim for about 10 hours per day.

There is a support group in Cork for FM as far as I know so if she is diagnosed she should attend. Even before a diagnosis attending one meeting and finding out which drs are recommended by others is worthwhile. She will learn far more from other people with the condition than she will from any doctor.

Lastly can I say that the support of people like you and other relatives and friends is worth it's weight in gold. Nothing is harder than having your symptoms dismissed by those who claim to care for you. Believing her and being there for her will help more than you can know to get her through this. My own experience is that coming to terms with the impact of a serious life-altering disorder like severe FM is like a major bereavement. It took me two years to reach a place where I could begin to acept and deal with the consequences of my illness. So be patient if she does turn out to have an ongoing problem as it will be a bit of a rollercoaster.

imokyrok

Unregistered wrote: »

Well done for persisting and confirming exercise has benefits sometimes. Neuromuscular therapy helped me greatly with non FM pain but FM was one of the condition listed as being treatable. See http://en.wikipedia.org/wiki/Neuromuscular_therapy.

Disclaimer This is not medical advice

Hydrotherapy was also good for me. Gentle exercise in a very warm swimming pool supervised by a physiotherapist. Sadly it is hard to access.

LegacyUser

Unregistered wrote: »

dsg,

I'd like to help, but this information may or may not be of use to you.

There is a female GP in Passage West, Cork who specialises in helping people with fibromyalgia. Sorry to be so vague, i dont have her number, but she helped a friend of my mother who was in a bad way 6 months ago, could hardly walk, headaches etc - had all the fibromyalgia symptoms, she is so much improved today - she travelled every week (or fornight, i forget) for 3 months, now its once a month. She deals with diet, supplements etc.

Hi, I am suffering from Fibromyalgia for many years and am very interested in hearing
about that GP in Passage West, Cork. Has anyone else any experience of her
treatment and what success did you have?