Fibromyalgia. Who to go to?

dsg · 03-01-2009 9:19pm #1

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 · 04-01-2009 6:26pm

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 · 05-01-2009 5:23pm

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 · 05-01-2009 7:19pm

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 · 05-01-2009 7:36pm

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

I was diagnosed by a rheumatologist in Galway last year.

Splendour · 05-01-2009 11:50pm

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 · 06-01-2009 12:26am

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

Splendour · 06-01-2009 12:56am

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 · 07-01-2009 11:32pm

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 · 02-02-2009 11:32pm

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 · 02-02-2009 11:47pm

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 · 03-02-2009 12:53am

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 · 03-02-2009 10:46pm

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 · 03-02-2009 10:55pm

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 · 03-02-2009 11:58pm

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 · 04-02-2009 6:36am

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 · 05-02-2009 10:30pm

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 · 19-04-2009 1:26am

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 · 21-04-2009 3:04pm

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 · 21-04-2009 8:14pm

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?

01-05-2009 10:09pm

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 · 02-05-2009 7:31am

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.

03-05-2009 2:33pm

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.

03-05-2009 2:35pm

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 · 03-05-2009 3:04pm

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 · 11-05-2009 1:12am

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 · 18-05-2009 11:29pm

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 · 19-05-2009 3:55pm

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 · 20-05-2009 1:00am

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 · 20-05-2009 2:34pm

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 · 20-05-2009 5:14pm

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

Fibromyalgia. Who to go to?

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