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(Friday, 19th Dec, 2014)

Fibromyalgia

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Anonymous  ·  07 Jul 2003
If anyone is interested there is an Irish site for Fibromyalgia geared towards friendship, chat and information. On the AltaVista search engine, Fibromyalgiafriends-ire.freeservers.com
The more we communicate with each other the more information we can gain about this condition
 

8 Posts

elainenmarie  ·  27 Jun 2003
Hi All, I read all the letters and everyone mentions the pain and fatique but no one mentions any of the other problems such as irritable bowel, sensitivity to chemicals, low levels of coping with heat and cold, anxiety and so on, yet I know that these are also a part of the whole condition having gleaned as much help as possible from websites all over the world where information seems much more available. Does anyone else have these problems. I could do with some affirmation here.
 

2 Posts

Lisa (lohare)  ·  06 Jun 2003
I was suprised to find fibro on this site. My mam was diagnosed with this condition about 18 months ago. she has just turned 50. Since she was 20 she has suffered with severe arthritis all over her body and now she also has fibro to contend with. At the moment she is having a terrible time with it, just drained all the time, no energy to even get out of bed. She also finds that her concentration level is very bad adn her memory isn't great now either. Is this common? As her daughter i find it very hard to watch my mam suffer like this and wonder is there anything out there that I can do to help her. I fear that she is going to get worse and have no quality of life at all. i am definitely going to tell her about this site and please god talkig to fellow sufferers will help. any advice welcome.
 

28 Posts

maura (qualan)  ·  29 May 2003
My friend was in an accident 5 years ago and as a result now supposedly has Fibromyalgia. That is to say, her doctor and consultant agree with the diagnosis but when she was sent to a specific Fibro Consultant, she totally disagreed. My friend had lost five years of her life and has been brought to penury. it is frightening to see how a lady who had a good job, a nice apartment, a little savings, a social life, dignity.....and now thats all gone. What is even more frightening, is that she has no support from her legal team, I honestly believe her solicitor thinks she is lazy and does not wish to rejoin the work force. She has the attention span of a two year old, I am 30 years in admin. and under no circumstances could I have my friend in a position, one day could be good followed by several bad days. I actually intervened with the solicitor to back my friend up but when I heard that 'well I am tired after a days work', I knew then there was little hope of success in her claim from the accident case. My only form of hope lay in the chance that the barristers representing her would see it as it is. She was accused of 'shopping around' to get a diagnosis that would suit her!!!!!! O Help....I think in the initial stages she would have gone to Timbuckto to see anyone that could deliver an answer. She has spent in the region of 50,000 Euro over the last 5 years, and did not know that she was entitled to a medical card until recently....and even then...when she sent them all the required information, much time passed and when she queried it, they had lost the application. A person like that does not have the stamina to combat these unreasonable conditions, off the cuff remarks and in fact I have worried on many occasions when her phone was not answered...in case..and you know what I am thinking!!

I am always on the watch out for information for her. Any advices welcome.
 

5 Posts

orla (Orlame)  ·  19 May 2003
Hi all,
Thanks Elaine for the link. There is a national Irish ME Support Group which can be contacted at info@irishmecfs.org, Tel: 01-2350965. They have a newsletter and organise meetings. There are also a few local support groups and a chat group which can be contacted through the national support group. The Irish ME Support Group have also a new ME Tips booklet which has 83 different tips on how to deal with living with ME and other useful information (e.g. useful addresses). I think that there is a lot of useful information in it for anyone with an illness/disability (not just ME). There is a piece here about this booklet
http://www.irishhealth.com/index.html?level=4&id=4885&ss=collection
 

8 Posts

elainenmarie  ·  10 Apr 2003
I have just read the discussion on fibromyalgia and cfs/me. As someone who was diagnosed 5 years ago and went through the rigmarole of doctors consultants etc. I must agree with the writers whose opinion of consultants in Ireland is low. I too have found that they do not know the difference between the conditions. I was given the diagnosis of fibro but in fact my symptoms tally in every way with CFS/ME. There is a support page in Ireland it is WWW.fibromyalgiasupport.ireland.freeservers.com There are no real support groups apart from the Irish ME Trust in Dublin. As you can imagine it is very hard to form and attend a support group when there are so many times you cannot get to the shop! On line can help I hope that is why I started the web page. I personally would be delighted to be able to chat back and forward with people with these conditions.
 

5 Posts

orla (Orlame)  ·  24 Jan 2003
Hi all,
I forgot to mention that there is an association, the Irish Chronic Pain Association, P.O. Box 37, Rathmines, Dublin 6, e-mail irishchronicpainassociation@hotmail.com They have regular meetings, sometimes with doctors.
Orla
 

2 Posts

Orla (Orlanic)  ·  10 Jan 2003
Dear all,
Regarding a Fibromyalgia Support Group, there is someone based in Dublin who has organised meetings in Dublin and Galway. I know that at least some of the meeting were very well attendeds so it sounds worthwhile to get in touch with the group. The contact details are: Gerard Devlin, Fibromyalgia Support Group, 20 Upper Baggot Street, Dublin 4 Phone 01-6607623. Regarding getting further information on Fibromyalgia there is a web site that publishes information on research (often in easy to read summary form) see http://www.immunesupport.com . As for the recommendation to do graded exercise I have mixed feeling about this. As someone has pointed out part of the problem is with people getting misdiagnosis, and some clinicians do not recognise the difference between ME and Fibromyalgia. The type of exercise regimes recommended for Fibromyalgia are not suitable for people with ME. I would also be wary of their use in Fibromyalgia, but have heard very mixed reports regarding their effectiveness. Some people seem to genuinely benefit from taking exercise, but I have also read comments written by Richard Bruno, a world-renowned post-polio expert, who is very critical of exercise regimes because of the potential for damage. He talks about this in his book The Polio Paradox, and his comments can also be read at http://www3.sympatico.ca/me-fm.action/ (Go to the Post-Polio Sequelae link on the left side of the page, and then click on the interiew with Dr. Bruno).
Hope this is useful,
Orla
 

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Anonymous  ·  09 Jan 2003
I think it's also worth mentioning that untreated or undertreated auto-immune hypothyroisism can lead to CFS or in severe cases ME. in 1982 1 in 100 women had auto hypo-t now it's as many as 1 in 15, many of whom are undiagnosed and the average age is getting younger. I spent over a year, under stress, constantly tired, unable to concentrate with 'fuzzy' thinking, cold, easily upset and with a feeling of being unable to get enough air. I was diagnosed with auto hypo-t, am on 200 mg of Eltroxin and other than the odd bad day, have never looked back.
 

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Anonymous  ·  09 Jan 2003
I am a bit confused by your message, Susan (Soupspoon): Are you saying that Rheumatologists will be able to diagnose CFS by trigger point evaluation? Many people with CFS will have the required number of trigger points (in the required areas) to satisfy the criteria for Fibromyalgia and some will not so trigger point evaluation can neither be used to diagnose nor exclude the diagnosis of CFS. I'm afraid I don't hold the same opinion as you that rheumatologists (in Ireland) "know their stuff" (with regard to FMS and CFS). Some rheumatologists in Ireland have written articles recommending exercise programmes for both people with FMS and CFS which would seem to me to be totally inappropriate to people with the (strictly-defined) CFS incl. those with CFS and Fibromyalgia. Many rheumatologists (and other doctors who have listened to them talk or read what they've written) are very confident about prescribing these exercise programmes treatments and from what I've read, don't seem to mention to people, whether they be other medical professionals or patients, of the risk of a deterioration in a patient's health. Little mention seems to be made by many rheumatologists of the physical abnormalities that has been found by research people with CFS (strictly-defined), including those with Fibromyalgia that can't be explained by deconditioning. I know many people with FMS and/or CFS who are very frustrated by the attitudes of certain rheumatologists, especially with regard to exercise programmes. I have heard quite a few stories of people being very unhappy about public lectures in Ireland, where rheumatologists were speaking about Fibromyalgia and CFS, with people sometimes making complaints or even challenging the rheumatologist at the time. I also know a lot of patients who are very unhappy by articles and books that have been written by some Irish rheumatologists in the last few years.
 

5 Posts

susan (soupspooon)  ·  09 Jan 2003
A rheumatologist will give a diagnosis of CFS or FM based on Trigger point evaluation. These guys know their stuff.
 

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Anonymous  ·  09 Jan 2003
I think that people should know that some of the people who satisfy the criteria for Fibromyalgia will also satisfy the criteria for M.E. or Chronic Fatigue Syndrome. This is important because in M.E. or Chronic Fatigue Syndrome (strictly-defined) there is an abnormal response to exercise and many people have found that exercise programmes, such as those recommended for Fibromyalgia, have made them worse. For example, for the first few years of my M.E. (which had occurred after I didn't rest when I had a viral infection) my main symptoms were muscle pains (I only had mild fatigue and mild cognitive cognitive problems at that stage). I wasn't diagnosed at the time and the orthopaedic surgeons and physios (I had over 100 physio appointments) kept encouraging me to try to exercise. This eventually led to a major relapse, which included my throat swelling right up that it was a little difficult to breathe, talk and swallow and my glands swelled up. When the test for glandular fever came back negative, I tried to start exercising again and I could only do a few lengths of the pool (I'd previously built myself up to being about to doing 40 lengths every two days although being able to all this exercise had never actually helped my pain). Anyway, I kept trying to gradually increase the exercise over the next year but instead of improving I got worse and worse and developed more symptoms. Eventually I collapsed before finally being diagnosed by Prof. Austin Darragh as having ME/post-viral chronic fatigue syndrome. I've spent the last eight years housebound and severely affected, only able to leave the house for essential trips as it can leave me flu-like (post-exertional malaise) for days, sometimes weeks. Tests on my immune system show that I have low natural killer cells as well as low dhea-s levels. Unfortunately, rheumatologists in Ireland often don't seem to distinguish between Fibromyalgia and M.E. (the M in M.E. is for Myalgic which shows pain is an integral part of M.E.) and this often leads to advice about exercise being given to people with M.E. which seems inappropriate to me. Some symptoms which people with M.E. have that don't seem to be part of Fibromyalgia (although Fibromyalgia and ME/CFS are very much intertwined) are tender lymph nodes e.g. under ears, under arm pits and sore throats - most people with M.E. don't have these symptoms all the time but can get them if they overdo it. I thought I should write this as I'd be worried that other people could end up like me if they undertook inappropriate exercise programmes. Another problem is that a lot of doctors don't know the symptoms or criteria for M.E. or Chronic Fatigue Syndrome and may not even consider the diagnosis even if you're a "classic" case e.g. you have a acute onset after an infection.
 

5 Posts

susan (soupspooon)  ·  09 Jan 2003
I see a pain specialist and have found 25mg of vioxx and up to 1800mg of neuronition a day to be very benificial. I was on a tens machine for one year and found it useful but it got in the way.I get trigger point injections of lidocaine every 3-5 months. To reduce brain fog and to incease sleep use 5-htp. Type all these names in to the internet and do a search to make up your own mind. If you can't swim, learn, as this is a grat way of exercising all the muscles. Pain specialists deal with fibromyalgia patients all the time and therefore you should get a referral letter from your doctor as soon as possible
good luck
 

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Anonymous  ·  06 Jan 2003
I wrote to IH about a month ago with a query on this subject.i.e. Is there any alternative medical remedy other than anti-depressant, which will not cause weight gain.

Has anyone any ideas?
 

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Anonymous  ·  24 Sep 2001
Hi
If you go to easons they will order it from usa for you it takes 3 weeks or you could try amazon .com and you might be able to order it on line quicker.
good luck Eileen.
 

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Anonymous  ·  20 Sep 2001
Eileen,

Where can I get this book "What the doctor may not tell you about Fibromyalgia" by Dr Stuart Armand? I would be extremely grateful if you could leave a message to let me know. Also any other tips by fellow sufferers would be most welcome.
 

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Anonymous  ·  22 Aug 2001
To all those with fibro i have suffered for years with this there is no cure but there is something you can do to reverse all your symptoms and get your life back you need to get a book called what the doctor may not tell you about fibromyalgia by Dr Stuart Armand also try www.geocities.com/ukfmsguai this is an english site it will lead you on to the usa site and you will get great support here good luck everyone let me know how you get on. Eileen.
 

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Anonymous  ·  06 Jul 2001
Ar present I have loaned my book 'Fibromyalgia, Fatigue and you' so am unable to give you the ISBN no. but I had no trouble getting it in my local book shop in Portlaoise so I am sure it is widely available. It is quite a small, grey backed book and Easons I believe will also be able to get it for you. Good Luck and soldier on!
 

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Anonymous  ·  06 Jul 2001
My sincere thanks to the person who advised me to go and see a specialist. Unfortunately I was diagnosed with Fibromyalgia, however my doctor is helping me get back on track. Thanks again. I had been going round in circles for three years wondering what was wrong with me. At least now I have secured a diagnosis and can try and make a recovery of some sort.
 

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Anonymous  ·  06 Jul 2001
Where can I get the book "Fibromyalgia, fatigue & you"? I was diagnosed with Fibromyalgia last month and want to read as much as possible about it. I have one book which was given to me by my Consultant Rheumatologist called"Coping with Fibromyalgia" by Beth Ediger. It covers diagnosis, symtoms, current treatments, coping skills - and where to find out more. Does anyone know of a support group in Ireland for "Fibromyalgia sufferers". I would be extremely grateful for any feedback regarding these matters. It's a daily struggle coping with Fibromyalgia and I have good days and bad days also. I would like hear from others and any tips they might have. I have Physitherapy once a week. I find that a light massage helps my back and neck. I also have ultrasound done on my lower back. I would also recommend the use of a TENS machine. Hope to hear from other sufferers soon.
 

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Anonymous  ·  03 Jul 2001
Dr. Michael Kelly, a consultant Rheumatoligist has written a book called 'Fibromyalgia, Fatigue and You' which is very helpful and the kind of book you can read bits from at random to remind yourself that you are not going out of your mind. I was diagnosed 2 years ago and it was a relief to have a name put on how I felt. I still have good days and some very bad ones but at least now I know what it is about having previously tried every treatment alternative and otherwise available in Ireland. My progress is disappointing to myself but without the help of my doctor I don't care to imagine how I would feel today. The book costs ten pounds and is a valuable tool in the fight against this condition as it is indeed a daily battle. If anyone has found a particular treatment or stratagy helpful please let us know.
 

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Anonymous  ·  04 May 2001
Fibromyalgia (also known as Fibrositis) is a felt as a series of sharp stabbing pains in the neck, shoulder blades, arms, chest, lower back and hips. The cause of these chronic widespread aches is not known, and most people find that it takes a number of years (7 usually) to have it diagnosed. Diagnosis is eventually made on the basis of pain in 11 of 18 specified locations on the body. Because of the widespread nature of the pain it may be difficult to rule out other causes like Lupus, Rheumatoid Arthritis and Infections. There is no known cure for this distressing condition, indeed most people struggle for many years to secure a diagnosis. Understanding the condition is a help and hands-on treatments like Physical Therapy can play a worthwhile part in the recovery process. Typically, a Physical Therapy treatment will only tackle some of the symptoms, but notwithstanding it can be very effective.
 

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Anonymous  ·  01 May 2001
To: the person who advised me to go and see a Rheumatologist called "Dr Frances Stafford at the Charlemont Clinic in Dublin". Could you please tell me where about in Dublin this clinic is? Could you leave the phone no for me? What is the outcome like for someone that has fibromyalgia? Did it take long for you to be diagnosed? What kind of medication do you have to take for it? How long have you had it?I would be extremely grateful if you could leave a new message answering these questions.

Kind Regards.
 

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Anonymous  ·  24 Apr 2001
Go to see a rheumatologist (Dr. Frances Stafford at the Charlemont Clinic, Dublin knows a lot about this condition). She'll help you find out if it is f/myalgia and help you to come through this condition. Well, she did help me.
 

8 Posts

John (jnc66)  ·  24 Apr 2001
Have you visited the website www.fibromyalgia.com? There's loads of information and the site is maintained by sufferers.
 

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Anonymous  ·  18 Apr 2001
Does anyone know anything about a condition called Fibromyagia or does anyone suffer from it? Also if anyone knows how to get tested for it. Have suffered from various symptoms eg pains all over, tiredness, hair loss, fatigue, bad memory, stomach ulcers etc for over 3 years now and it has been suggested to me that I may have it.
 
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