The reality of chronic pain
By Deborah Condon
In 1995, Colette Coughlan was a 35-year-old, self-employed women with two young sons, when a jeep travelling at high speed crashed into the car she was driving. While initially she appeared uninjured, the accident resulted in her becoming a sufferer of chronic pain, a poorly understood condition, which she says, has 'consumed' her and 'affected every facet of her life'.
"I was turning right on a busy road in Dublin on my way to a meeting. The car was stopped, I was indicating right and I was in first gear when a jeep doing around 80mph went into the back of me", she explains.
Because the force of the crash caused her car to spin around, the jeep also hit her back passenger door and her own door. The car was then spun across the road into the path of a juggernaut, which started to jack-knife to avoid her. Luckily because she had kept her foot on first gear, she was able to drive out of the way in time.
Amazingly Colette appeared to be uninjured and actually remembers being 'so together' after the accident.
"I remember telling the guy who hit me to ring the police. I took his name, his details. I can even remember writing my details down for him. My hands were shaking but I was so together. The accident meant that I was going to be late for my meeting and I was more concerned about that", she says.
The car was so damaged that Colette had to get in on the passenger side to drive to her meeting. She says that she was still very shocked, her legs were shaking and she was beginning to feel pain, 'but I had an appointment and I would never let anyone down'. She didn't even call anyone to tell them what had happened.
She says it was only when she arrived at the house where the meeting was to take place, that she realised she was nearly killed. As the meeting went on, the pain got worse. She went home after and lay on the kitchen floor and has 'been lying on floors ever since'.
She did not attend her GP until the next day, when she was in 'excruciating pain'. She was sent to hospital for X-rays, where she was told she only had soft tissue damage and that she'd be better in six weeks.
However little did she know that she was suffering from chronic pain, a long-term, complex condition, which effects people biologically, psychologically and socially. At least two in three sufferers experience pain on a daily basis and one in five go on to be diagnosed with depression as a result. The pain may affect one or two areas of the body, however some people experience pain throughout their body. For Colette, the pain is everywhere in her body, 24 hours a day.
At the time of the accident, she was a journalist and food consultant. Her work included doing food programmes for television and writing recipe books. Initially her injuries were just in her neck and left hand. However she was left-handed and after a while, she could no longer feel her hand and all movement was gone. She says she was also getting headaches that were so bad, she literally could not think or formulate sentences.
It was at this point that Colette encountered a problem that is unfortunately all too commonly associated with chronic pain, that of the GP with little or no knowledge of the condition and even less sympathy.
"I remember going to my GP and saying I was desperate, the painkillers were not working and he would say 'are you sure the pain is coming from your neck, are you sure there isn't anything else going on?' In other words, are you just imagining the pain? It's bad enough being in that pain but it's worse when your GP is doubting it and is not offering any kind of assistance. My left hand wasn't working and he did absolutely nothing about it", Colette says.
The next thing to happen to her was a disc going out of place. This left her unable to walk or even sit on the toilet for a number of days. She then started to develop sciatica, a condition characterised by pain in the lower back, which can run down to your feet. At this point, she says, she was experiencing pain literally from her head to her toes.
From the time of the accident in 1995 right through to November 1997, Colette believes she 'stopped coping'.
"I didn't know I had stopped coping but I was tearful, I didn't want to go out and I really couldn't do anything. I went from being a person who could cope with anything to somebody who was in a mess and I didn't want anybody, including my family, to know about this."
Eventually, one day in November 1997, the pain got so bad, she changed GPs. She went to a female GP whom she had heard good reports about and the first question that was asked of her was 'who is managing your care?'
"It was the most pertinent question that anyone had asked me during this whole process because up to that, I was like someone in a tumble dryer, going round and round, looking for this mythical cure. When the GP asked me who was managing my care, it dawned on me that I was", she explains.
The GP said that they needed to formulate a plan.
While Colette's health problems were far from over, this put her on a more positive treatment path. Instead of next to nothing being done, some issues began to be tackled. For example, she attended a facial pain management specialist because of her jaws, which were a major source of pain due to spasms taking place. She now has regular injections into her jaws to stop these spasms.
However Colette's body continued to feel the repercussions of the car accident. Amongst other things, she was found to have joint problems, liver problems, her body could no longer deal with cholesterol and in 1999, she was diagnosed with fibromyalgia, a condition characterised by muscle pain, stiffness and chronic fatigue.
When this fatigue set in, she had to give up work. At the time of her last television programme, she could 'barely walk'. In 2000/2001, the fatigue worsened and she began suffering sleeping problems and was eventually diagnosed with sleep apnoea. She was also told she was only reaching stage one of sleep. In other words, she was not reaching the stage of REM (rapid eye movement), during which dreams take place. She was also diagnosed with ME, which is also known as chronic fatigue syndrome.
Her cognitive ability and memory has been affected, to the extent that she can no longer read novels, something she loved to do. She has also been affected by depression, a condition she describes as 'horrible'.
"I would never in my wildest dreams have understood depression because I was Ms positive. If I wanted to do something, I did it."
Today, Colette estimates that she spends 98% of her time in bed. If she does have to do something, or go somewhere, she then 'pays for it', a situation she describes as 'the horrors'.
"Anything I do, in terms of being up and doing something, afterwards it is so awful. I perspire and can't control my body temperature and feel awful", she says.
Colette's marriage broke down in 2001 and her two sons, now aged 19 and 16, live with her. She says her illnesses have been very difficult for them, something she feels extremely guilty about.
"They went from having an all-singing, all-dancing mother to being my carers. They are not living in a normal situation and I have a huge sense of guilt because as a mother, you think you should be there for your children. You're there to look after them and to protect them. Having come from a family where my mum did everything and was super woman, that's what I am used to so that's what I think my children deserve", she explains.
Colette says that when people ask her how she is now, she simply says 'grand' because often, they don't want the real answer.
"You lose friends, people that you would have considered good friends because they see you as being normal. You're not missing an arm or a leg or whatever. I suppose they begin to feel that you're a bit of a moan and after a certain length of time, they are not interested in you. People don't know about chronic pain. I didn't know about chronic pain and didn't even know the chronic pain association existed!”
Colette attended her first meeting of the association, soon after hearing about it while she was in hospital in 2000. The Irish Chronic Pain Association, which she is now the secretary of, meets every second Sunday of the month in Jurys Hotel in Ballsbridge.
The average attendance at each meeting is between 25 and 60 people and the ICPA currently has around 400 members. However she emphasises that far more people are directly affected - 13% of the population - and that is not to mention all the families and friends that are indirectly affected.
The logo of the Irish Chronic Pain Association
The ICPA would like to see the development of a National Pain Strategy, which would tackle issues such as:
-GP training: Currently just 1% of a GP's training focuses on chronic pain. This needs to be increased.
-An increase in the number of consultant pain specialists.
-The recognition of chronic pain as a disease in its own right.
-More awareness on the issue.
-The need for hospital beds to be made available specifically for chronic pain patients.
As with most patient support groups, funding is also an issue. The ICPA receives no funding from government, except for a grant from the Department of Health towards its newsletter. The issue is simply 'not on the Department of Health's agenda'.
Colette says the ICPA needs money from the government in order to open up branches outside of Dublin.
"We need to be able to give people in Ireland what people in Dublin are already getting. It is such an isolating condition and it is awful when you are on the phone to somebody and they are so far away, you know you cannot help", she explains.
She adds that currently, only one person who works with the ICPA does not suffer with chronic pain themselves, therefore everyone else is compromised.
"We're the only office with a bed in it!"
Nowadays Colette takes a high amount of medication and attends a cognitive behavioural therapy session every week. She has been attending this weekly session since 1998 and says that it has helped her enormously by teaching her 'to grieve for the person I was and the life I had'.
"What I miss most is dancing with life."
The ICPA is located in Dublin and can be contacted on its information and support line at (01) 804 7567. The association's website can be viewed at...
I'm coping with the pain, but my biggest problem is the way the medical professin ignores hypoglycaemia. Its not related to the pain, but it is part of everyday and night. Any fasting procedures cause more trouble from blood sugar being ignored than from the pain of the treatment. Why do medics insist on this policy of one issue per patient. We can't come apart like jigsaws and send the vertebrae to one place and the pancreas to another while leaving the brain at home. Is the holistic approach limited to those without any conventional qualifications ? Does anyone know of any conventional medics who see whole people ?
his article has really opened my eyes. I always virewed pain as a signal that something (curable) was wrong, so you take pain meds and then see a doctor / dentist - who fixes the problem.
Ahhhh but perhaps if a conventional medical practitioner was to see the whole person, the drug companies would lose out and some doctors would need to change their profession. If people were advised about diet in relation to pain this might help and if the whole mental aspect of pain was incorporated into a session with ONE doctor, taking a holistic approach, the patient would have a better quality of life. Perhaps also if complementary therapies were available on the medical card, public hospitals would have these therapies available just like the elite have available in their private hospitals. I suffer chronic pain all over my body since 1995 when I was involved in a car accident and the hospital I attend and my GP have no interest in me. I use over the counter medication and massage to cope but as I get older this pain is getting worse and at times I wish I was dead
I THINK I MAY BE SUFFERING FROM CHRONIC PAIN IN THE RIGHT SIDE OF MY CHEST THRU TO MY BACK, I'VE HAD ALL THE TESTS XRAYS AND SCANS AND NOTHING IS SHOWING UP,THE PAIN IS CONSTANT BUT OFTEN I GET SPASMS AS IF SOMEONE HAS KICKED ME FROM INSIDE. THE SPASMS ARE THE WORSE AS THEY ARE EMBARASSING BECAUSE WHEN YOU GET ONE YOU CRY OUT IN PAIN, JUST BECAUSE YOU CANT SEE IT DOES'NT MEAN I AM NOT SUFERING. IT WOULD BE EASIER IF THEY FOUND SOMETHING THAT COULD THEN BE TREATED.
Dear Collette I have just read my own life storie in reading your storie in 1993 while out for lunch with a friend I want to the bathroom and triped on a louse tile on the way out, the ankle was pretty painful from the on start but at the hospital that day they said nothing was broken and if I want to get back on my feet ASAP it would be a good idea to have phyiso. I took this advise on board as I was due to start a new job, 4 weeks into the therapy I still had a very painful leg but the swelling had spread up into the thigh it was bright pink and shinie I arrived at the phyiso one morning and he took one look at the leg and sent me directly to the Hospital for an xray on the leg as he was sure I had a clot. and guess what he was right, boy was I lucky if that clot had traveled. anyway the leg never recovered the pain was just more then I could bare most days I was told I had RSD.I had two children to care for, but I was lucky my mother inlaw was and still is a wonderful support. Over the years the pain had spread into both legs, One thing I would like to mention here ( please be careful at pain clinic\'s sometimes things will not always go to plan If you need to know more you\'ll have to ask) anyway in all over the years I lost power in both legs the lower back then the upper back I also lost power in all lower body functions so much so I have to have my bladder reconstructed and now I have to use an cather to go to the loo but it is better then being in nappies I think those two years where the hardest of our lives,I am a lucky girl I have a wonderful husband who has taken great care of me over the years he might be a little greyer but he is still here!! over the years I developed Distonia as a secondary and after the Op on my bladder was again had got so ill more test where done to be told this time I had Addisons disease as if the fatigue was bad enough, I spent most of my days in bed I get the girls to school in the morning come home set the alarm and go back to bed untill it is time to pick them up again, I have no apeal for food my hubbie does all the cooking as the smellcan make me very sick all this and dealing the pain constantly can get to you sometimes but for my familys sake I try not to mention it to often, Again friend have gone by the way side a long time ago,I can\'t say that I have a girl friends people just can\'t take in how bad it can be and we can\'t blame them it has to be on your own door step before you realise it ...There is so much more I could say here but it would go on forever. and Anne is right Doctors won\'t look at more then one thing at a time so pain in more the one place is a real problem when your admitted to hospital.. I take so much medication now my hubbie says I rattle when I walk and you know what, I think he\'s right !!! I wish you all as well as you can be and don\'t be afraid to talk up for yourself, it\'s up to you. if your in pain you need help, and tell them so. Good Luck Regards to you all Jean Long
TO:Anonymous Posted: 14/04/2005 11:13, AND ANYONE ELSE READING THIS TOO. You have almost summed up the approach of the vast majority of doctors to the subject of chronic pain, many of them simply do not accept it exists, I know, I have met many of them. Acute pain is usually a symptom of another medical isse, but Chronic Pain, (CP from her on, ok?)is far from being a simple symptom. CP actually causes physiological changes within the body, and that is a simplistic description of a disease. Basically, you experience pain, your body reacts by sending out endorphins to ease the pain, and massive amounts of adrenaline to help with the \"fight or flight\" protection system. Of course you neither fight, nor flight, so the adrenalin just just turns to crystals and they lodge in your muscles, leading to the \"pain all over\" or pain everywhere, so loved by doctors as a means to label you hypochondriac, at the very least. The chemical changes go on, and the endorphin receptors burn out, so it takes every increasing amounts, of ever stronger pain meds to offer even a modicum of relief, and eventually, no relief seems possible. Personally, I became depressed, for lots of reasons, the chronic pain, and the unknown future, I too had suffered major neurological damage in a simple rear end crash,and it got worse, and despite my Gp sending me to the A&E of a well known Dublin hospital I was told I was a nuisance, left to the end of the long queus, even told my card was continually placed to the end deliberately.I sat with my wife in that A&E from about 4 pm one day and at 2 AM the next morning the doctors on duty took us into a closed room and told me to stop coming to their A&E, if I did continue I would be left to sit there, and if I was lucky enough to die there, no one would lift a finger until the smell got too bad and the flys were a problem. Hard to believe? I will swear to this on a bible, before any judge, it happened, believe me. Worse was to come, as I too developed a disc problem in my neck, but I did not know that, and suffered bouts of loss of power in my hand, but it would return once I adopted a different posture, then the nerves would be released and normal feeling again, except for increasing numbness and pins and needles in my left hand. To cut a long story short, eventually I had to fight my way to an MRI scan and it showed it was almost too late, my spinal cord was compressed, dangerously so. What was nothing but an annoyance for the A&E staff was my spinal cord getting closer and closer to being permanently damaged. I had surgery to remove the disc, and thankfully, I recovered most of the use of my hand, but to this day I continue to suffer constant, intractable neuropathic pain, especially in my hands, fingers and arms. We relocated from Dublin to \"another place\", and now I don\'t qualify to attend the one in Dublin as I\'m now in a different Health board region. Fortunatly, my new GP\'s help as they can. However, having written to the specialist in Dublin for my records, he cannot supply them, the hospital would have to ask for them, and no one there is interested in doing so. CP sufferes get a raw deal, mainly because few can imagine pain with no end. Think of it, you break an arm or leg, suffer intense pain, and I\'m not diminishing it\'s severity, but somewhere in your mind is the knowledge that it will end. Wake up at 1 am with a bad toothache, and you will spend the longest night imaginable, and suffer cruelly too, but again, you have the knowledge that once you can get to the dentist you\'ll have a different pain for a while but within days it will all be gone. Try this, imagine say the worst two pains you ever experienced, and then try, really hard, to imagine what it would be like for those two pains to persist for say, 2 years, non stop. when you begin to tremble at the thought, imagine them worsening and being told they will remain with you 24 x 7, by 365 days a year, for the rest of your life, barring a miracle!!! That is the lot of a CP sufferer.
Anon 6.58, it's 11:13 here. Your story is astonishing. Again an eye-opener for me. It is incredible how you were treated by the Dublin hospital. I had no idea of the degree of gravity suffered by CP victims. Of course is is logical for the endorphin response to become overloaded and the symptoms of Addisons to set in due to Adrenal burnout (not to mention the possible efects of excess cortisol - the stress hormone) but I am ashamed to admit that I hadn't really thought about it before now. I hadn't really considered the concept of he difference between Acute pain - for which there is a definite cause and cure and CP for which there is none. We have TV series hich address people fashion problems, peoples money problems and even peopls relationshoip/family problems. I wonder would there be any scope for a series which addresses peoples medical problems where diabetes, CP, Addisons, Hypothyroidism etc. could be featured. Would something like this inform the uninformed (myself being a typical example) and I daresay, even educate doctors?
I had two miscarriages in 2001 and then developed low pelvic pain like period pain which was there for a solid two years. I had investigation after investigation and nothing was found. One doctor in a major hospital in Dublin suggested to me that it was 'all in my head' I was devastated. Although this has now resolved with pain only present occasionally I have had continuous health problems such as vertigo and I have devloped lower back pain even though I did not hurt my back in any way and as a consequence of this I have been off on sick leave for considerable periods of time. I am able to cope with lots of painkillers and NSAIDS and I am back in work which is fantastic. I also changed my GP and he is the most understanding fantastic man and will not make me feel as though I am going mad. Thank you for highlighting this because people do not understand unless you can see a broken leg or arm
I think the biggest problem is hiding the horrible way a person feels from family and friends as you presume they will not understand. I suffered from a different complaint, but now cope, after meeting a doctor that took the time to listen
Been there, bought the t-shirt. I sympathise with you all. I do know the feeling and have had every treatment, procedures and multiple surgeries,Cyclimorph injections just about the only thing keeping me going but have had to stop them because of dependence and tolerance, topped off with a two week private pain clinic that was about as useful as an ashtray on a motorbike. I have recently has a spinal cord neurostimulator implanted and at last some relief. I still have pain but not as severe and not all the time. It may not be for everybody but definetly worth a try. I\'m glad i did. There is something or somebody out there for everbody. Don\'t give up. You will get there. Life is there to be lived not endured. You have to beat that CURSE THAT IS PAIN. Life is too precious.
But what about when the pain is caused by a Dr.prescribing a drug which should not have been prescribed for someone with a previous history of "Pains and Aches"-a cholesterol drug? I feel my Dr is practiceing defensive medicine rather than trying to cure me.I do not wish to sue -just to get better.
O im not going mad, I am not the only one with this dreadfull condition Fibromyalgia (chronic pain),the pain has me demented and like most e-mail's iv read my friend's dont call any more and family just dont want to know,Im one of those people that cant help saying how i am feeling i have to say by getting it off my chest its like a weight lifted from me but iv paid dearly i could nearly swear people are trying to avoid me .I think mabe a help line would help when the like's of me and others are feeling down it would be nice just to have someone to talk to that's in the same possition with Chronic pain,thanks a lot for the info on ICPA in Jury's Hotel and telephone nu.
To the person who was prescribed a cholesterol drug. I think the answer for you is to change your GP. I did and it has made a world of a difference. He does not think I am mad, or does he put me off saying 'You are only 29, you should not have these problems' (Which, has been said to me on many of occasions). Going to a GP, who is sympathic makes all the difference.
To contributor who advised me to change my doctor. Thanks. I live in an area where we only have one practice-but i will certainly try to find someone else.
Collette i have just read your article. I was diagnosed with Fibromyalgia in October 2004. 18 years i had an accident at the Ulster Championships of Irish Dancing, I was knocked down on stage by another dancer and i landed on the base of my back. Straight away i felt tingling in my legs but half hour later due to shock i was back on the stage dancing. I was in a lot of pain the next day and following this i began my long road of doctors, chiropractors, osteopaths, orthopaedic surgeons. Nobody could tell me what exactly was causing my pain. I began to believe the doctors etc... thought it was all in my head. I became pregnant on my first child 5 years ago, i was very worried that the pain i had was going to get worse and 6mths into my pregnancy i was right, the pain in my back was unbareable i had to take time off work until i got a brace to wear which did help a fraction so i was able to return to work. After i had my son the pain didnt stop there, my legs became weak, they would shake with the pain, i couldnt sleep very well due to the pain in my back and my son had colic very badly,then i developed Post Natal Depression. I was tired all the time but nobody could understand this. So i began to think that perhaps i was imaging it all. I began to see less of my friends, they couldnt relate to me and my depression got worse, however i forced myself back to work hoping that all my problems would go away. I then had a car crash in 2002, thankfully i wasnt badly injured but i suffered seated belt mark which caused colarbone and shoulder pain and mild concussion. The pain in my shoulder became very bad so i went to physiotherapy which didnt work so it was back to the Chiropractor. I found that this helped until i became pregnant for a second time in 2002 but six weeks into my pregnancy all my fears of pain multiplied. By the end of the pregnancy i was barely able to walk. I needed crutches to help me. I felt useless. My husband didnt know what to do. After my daughter was born, believe me when i tell you this i milked the hospital for pain killers because i was in so much pain for months and i couldnt take anything. Two years later through pushing my GP to help me i finally got to see a Rheumatologist who told me i had Fibromyalgia. At last a name, its not in my head i actually do have something wrong. It took 18years for somebody to tell me. I have lost lots of friends over this. I shut myself away. I looked normal and to others i was fine. The odd person would mutter, oh theres always something wrong with her. Some people believe that its related to some problem in your life and if you get counseling on it you will be fine and your fibromyalgia will go away. Thats not the case. Is it? Constant day to day pain, feeling tired all the time due to the pain, feeling worthless because you cant do all the things you use to do. On days that i feel a boost in myself i try to get a lot done but i know the next day i am going to pay for it. My mother doesnt understand and thinks i can 'shake of the tiredness'. I have explained everything to her but it doesnt seem to go in. I am on meds from the doctors now and i have attended Yoga which i felt relaxed my mind to a point i felt content with. I am now taking up Tai Chi which was recommended by my Rheumatologist. I really wish doctors where more understanding about FMS(fibromyalgia)and that there were more help groups out there. Support centres for your family and friends so that they can understand. Its a very lonely road when people dont understand. I am glad i have come across an irish web site at least i am not the only sufferer. I am joined with another site and i have been amazed of the amount of people from around the world who have FMS. Its good to know that we exist.
You may want to check the thyroid Fibromyalgia connection on the about.com thyroid website. Also have you considered DHEA supplementation. These are thought to be very good for the Chronic fatigue side of the condition.
Pain is part of my life for over 20 years. Some days worse than others. I suffered for over 2 years with wild bad headaches,and ear aches. I went to Doctor after Doctor, and was told every thing and anything including I was imagining it. I just decided one day to call to see a certain Doctor, who immediately sent me for a XRay, and it showed up that I had raised pressure on my head which was a Brain Tumour. I had my operation, and afterwards I was left totally paralysed from head to toe, on both sides. I got the power back on one side after intense physiotherapy in Dunlaoghaire. I spent 9 months in Hospital, but I am glad to be alive as no matter how bad the pain is or ones quality of life-our life is precious, and money cannot buy ones life. If there was only more Doctors who would not think, that pain concerning women was all in their minds, it would make the pain easier to tolerate, also for cases like my own, if there were a hydrotherapy unit in every county. I am presently confined to a wheelchair.I suffer with a lot of pain,mostly in my back and feet. At night I get Pins and Needles on the sole of my Good Foot,and it is worse than pain, as it keeps me awake sometimes. When I can afford to go to a private physiotherapist for a session, it easess the pains, etc. I miss not being active, as I was a dancer,and a runner.
Hi all, Ive recently just been told by my doctor that i may have fibromyalgia. I get really bad shooting pains all over. Also i can't sleep. I take herbal sleeping tablets but they don't work. Does anyone with this condition get sleeping problems? and if so how do you get to sleep? Also does anyone know of any herbal medication that is good to ease the pain of fibromyalgia. I can't take anything my GP gives me cause it makes me feel really dizzy and weird.
Hi all sufferers of pain,when the pain gets rough, try and get tough. Gemma, why do u get dizzy when u take medication prescribed by your G.P.? Do you check out the side-effects that the particular tabs. may cause? I always check, as there may be a different one, that does not make u dizzy.
In 1998 my friend hit her head on a bus and was thrown from her seat in a bus accident. She was very ill initially for a couple of weeks, that started the deterioration of the rest of her life. She was 35 then, single, good job, living in rented accommodation. She continued to work for three years against all the odds, only taking time off to attend doctors/specialists by using her holidays. She went to intensive physiotherapy until the therapist told her there was no point. She spent in the region of €35,000 on consultants, x-rays, doctors, medication. Finally with all her money gone, she had to give up work after three years and rely on social welfare which in itself was the most stressful of times, trying to prove to them that she had Fibromyalgia/Chronic Pain....In the early stages I had persuaded her to bring a case against the bus company, I can say now, that this has been one of the reasons that she was suicidal all last year and has been in counselling for over a year now. The legal people keep telling her 'it would look better if she was seen to try to work' She has no concentration, sleeps so badly, has pain at all times, but her solicitor tells her 'We all feel tired' - so now she has moved to a bed sit that is smaller than the bathroom in my house, the walls come in on top of her. Sometimes she is not well enough to leave this room, she has nothing to look forward to, all avenues seem closed off. The solicitor has warned her that the Judges do not like Fibromyalgia/Chronic pain cases and this has been verified by the last no. of cases that were processed. The other extraordinary aspect to this is that she is being told that she would have got this condition anyway as she was predisposed to it with her earlier medical history. It is frightening to see how a life can change within a few minutes and to see how hope can fade until there is almost nothing left..... Maura
Maura, your friend should not have used her holidays for doctor / hospital appointments. This is what sick leave is for.
Hi, I seem to get dizzy on most medication that isn't herbal. I don't know why. I seem to be very sensitive. I have had this problem my whole life and have to go back to the doctors to change and then change again. Sometimes i will need to change about four times. I am a student and i can't aford to keep changing untill i find the right one. So if i'm going to have this problem for a while then i want to go herbal. But there seems to be no one to talk to that doesn't cost an arm and a leg about what the best herbal treatment for fibromyalgia is. There is lots on the internet but i find it confusing.
hmmmm, very helpful, I will tell my friend that she should not have used her holidays six years ago for her doctor appointments! The reason I wrote about my friends predicament was that I was hoping to get identification from another pain sufferer, there is a lot of hopelessness with this disease, which comes first, the depression or fibromyalgia or does it follow that those that suffer depression go on to develop fibromyalgia, this was put forward by a barrister! I suppose he would know with all his legal training!!!! Cannot help feeling frustrated and very cynical watching a life deteriorate so rapidly with so little help and understanding available to the sufferer. I think one of the biggest obstacles is the feeling of not being believed....just try and justify the condition to Dept.of Social Welfare or whatever it is called now for continueing benefit and rent allowance...its positively humilitating.... Maura
Most herbal treatment, sold over the counter is very mild and therefore it's efficacy is minimal. Also it's potentcy is not standardised and hrbs frequnetly contain many active ingrediant, not all of which may be desirable for your condition. As a student, see if there is a dotor on campus which you're intitled to attend at a reduced rate and ask him to give ou somethign for the dizzy speels. You may have an imbalance of fluid in he inner ear which the perscription meds are irritating so it's importan to get this seen to as well.
Maura, It don't think it follows that those that suffer depression go on to develop fibromyalgia, as I know several people who suffr from depession who never develop Fibro. However, I can imagine that constant pain would make a person depressed.
Hi Maura, Fibromyalgia is triggered by an injury and a low immune system. I have a bad immune system which has learned me to believe that the accident i had at 14 was the triggering of FMS. Depression does not bring on FMS. FMS brings on depression. I suffered from PND after my son but while i was pregnant on him the pain started. So depression was not the trigger. Does social welfare (disbility section) not recognise Fibromyalgia? Have they taken it off her? If its not a condition then why are people diagnosed with it. In the UK its a recognised condition but its not understood completely how people get it. It seems to happen those who's immune systems were low and suddenly where in a post tramatic stress situation(due to an accident or a death in the family). I have read a great deal on Fibromyalgia and unfortunately medics cant explain fully why this happens. Not enough of research is done on it. A person who suffers from FMS should do the following stay away from stressful situations including people who cause stress on them. Take up a different approach to life, as in, i am not going to let FMS beat me. Positive thinking is the way of thinking. If i thought negitively i would not be here for my children, husband or myself. I was always full of life, ok i am not now but i have learned in 6mths to change my ways of thinking. Its difficult when you are in a lot of pain, but you have to learn to deal with it. Go to Google and do a search for Fibromyalgia. You will find lots of explanations of the disease there. Also Maura try not to get excited over what people are telling you. Stressing yourself out over your friend is not going to help anyone. I hope i have been of some help and not a burden of useless information.
MAURA, This is for you and your friend to read. Its long so print it off. Searching For the New You: The Four Phases of Change By Patricia A. Fennell, MSW, CSW-R As a society, we tend to look at illness in an on-off way. Either you’re sick or you’re well. And if you’re sick, you have a distinct illness. This way of looking at illness — seeing it in an acute framework — is rarely totally effective in the treatment of a chronic illness like fibromyalgia because fibromyalgia patients cycle repeatedly through relapses and remissions. When you experience yet another cycle, everyone — you, your friends, family members and health care providers — can feel as if they\'re failing. Understandably, as a patient you try to be who you were before the onset of your illness, but you can\'t be. You don\'t have an acute illness that can be cured; you can\'t be returned to your pre-illness state. The Four-Phase view looks at your situation differently. Our research has confirmed that four phases of adaptation occur in chronic illness and patients must navigate through these four phases on their way to defining a new self and a new life. The Four-Phase Model provides a framework for understanding this critical process. The goal is not cure, but integration. Fibromyalgia (FM) patients are individuals and are not all the same. In addition, your physical, emotional and social needs in the early phases of FM may be considerably different from those you’ll have after you’ve been ill for several years. Some interventions won\'t work in earlier phases — you’re more likely to be able to do the things that your health care provider recommends if you understand what phase you’re in and what your needs are at that phase. The phases were identified from experiences of real people just like you. One of the best ways to get an overall picture of the Four Phase Model is to examine it in light of your own experience. As you read the allowing descriptions, you may recognize your-self as being in any one of the phases, but most people find themselves in Phase 1 or Phase 2 initially. Each phase is distinguished by its physical, psychological and social characteristics. Crisis In Phase 1, you may find yourself increasingly distracted by a number of physical symptoms that are beginning to interfere with your life. You might encounter increasing pain or constant fatigue. Nonetheless, you push through your symptoms, trying to continue your regular activities. This is the coping stage of Phase 1. Many people with chronic conditions are able to cope for a long period of time. Eventually, the symptoms become so bad that you can’t ignore them, and now you enter the onset stage of Phase 1. This could be triggered by a flu or an auto accident; but however it begins, you feel worse than before and are able to do less and less. If you have been sick, your doctor may think stress is keeping you from a full recovery. He might believe you are depressed and encourage you to get more sleep, cut back at work or join an exercise class. You may try to follow these suggestions, but your symptoms worsen until you enter the acute emergency stage of Phase 1. When you go back to your doctor, you’re re-examined and tested at length, but it could be quite some time before you’re given a diagnosis. When there are few answers, it is common for people to use denial as a way to manage the long coping, onset and acute emergency stages of Phase 1. As your physical condition continues to deteriorate, your private emotions may start to break through in public. You might burst into tears at a staff meeting or break down in frustration in the grocery store because you simply can’t recognize the canned goods you usually purchase. This kind of experience is typical in the crisis phase and the loss of psychological self-control can cause shame and self-reproach. Understandably, as a patient you try to be who you were before the onset of your illness, but you can\'t be In the crisis phase, it is common to feel increased fear and despair. You might wonder if you are actually dying or losing your mind. You know you feel terrible and you know you are getting worse, but maybe something is also wrong with your mind. Remember that at this point no one has labeled your situation. No one really knows what is going on and you are probably receiving conflicting advice from family, friends and doctors. It is not unusual to feel increasingly isolated and fearful of what other people are thinking about you. You may find it hard to talk to the people you have always been closest to because they are having difficulty understanding what you are going through. Depending on the severity of your situation, your losses can be considerable. These experiences are potentially traumatic. The people in your life may respond in a variety of ways to your experiences during Phase 1. Your illness probably has produced dramatic changes in their lives too, and they may feel shock, disbelief, or even annoyance in response to some of your physical symptoms and emotional changes. The degree to which a family copes with the crisis phase depends on the individual family, and how strong it was before the crisis struck. In the crisis phase, people begin to queue up along a continuum that extends from support to suspicion that you are malingering. Any negative responses can hurt you all over again, causing a kind of secondary trauma. Stabilization During Phase 2, you begin to create order out of chaos. Though your symptoms do not disappear, they may reach a plateau. You may begin to recognize a pattern to your physical condition and this helps to orient you. For example, you may notice that if you climb a set of stairs in the morning, you may not be able to do it again until later in the day. If you drive for more than 10 or 15 minutes, maybe you become fatigued or confused about how to get where you’re going. Whatever the actual events, you begin to discover your new parameters. During Phase 2 you might experience a relapse to the crisis phase as the result of a bad flu or because you have tried too hard to return to the full activities of your pre-crisis life. Eventually, most people’s symptoms begin to stabilize. By Phase 2, most people have received a FM diagnosis. At first this may give you an enormous sense of relief because it explains your pain, fatigue and confusion. However, you quickly learn that a diagnosis of FM does not explain how the illness started or what’s going to happen to you in the future. So ambiguity returns. Your doctors may have difficulty halting symptoms or developing a cure. No one seems willing or able to tell you how to live under these new conditions. By now, you have most likely experienced reactions from others of disbelief, rejection and stigmatization. Some negative comments may even have come from your health care professionals. As a result, you become very cautious about what you say and to whom. You may begin to try to “pass” for well. You pretend you are your “old self” even though you are suffering. The pressure to “get better” or “be normal” can be extremely painful. Many people simply do not understand what you’re going through and some might even blame you for your condition. As a result, you may find yourself withdrawing from the people with whom you’ve always associated. In their place, you may seek out people more like you, people with FM or other chronic illnesses; people who under-stand your situation. You begin to educate yourself about your illness and seek other sources of emotional support to make up for the losses you have suffered. You may go through a period of “doctor hopping,” hoping to find a better treatment or a cure. Although this normal behavior may be upsetting to your primary care physician, your search for health care professionals who may be able to help you shows that you are beginning to feel as if you can assert some control over your life. Boundary and role confusion is also normal in Phase 2. You probably do not know the dimensions of your physical limitations. You and those around you are anxious for you to return to your pre-crisis self and resume your former roles and schedules. Unfortunately, you quickly find out that if you attempt to do this you begin to encounter serious problems. You may feel like a small child just beginning to learn how to negotiate the world again. Few things about your body, emotions or mind act the way they had, but you may keep trying to behave like the person you used to be. Despite your best efforts, you may fail repeatedly at what you attempt. As time goes on, you tend to feel more and more guilty and ashamed. As you go through the cycles of physical relapse and remission, the people in your life experience them as well. They can become as exhausted by the process as you do. They can become traumatized, just as you may have. Typically Phase 2 results in increased conflicts with family, friends, co-workers and some care providers as they lose patience with your inability to “get back to normal.” The persistence of your illness frustrates everyone. If you’re in a relationship, it is not unusual for your partner to begin thinking that you’re not the person you were and that this isn’t the life they signed up for. Without informed guidance, many FM sufferers can get caught in a repeating loop between Phase 1 and Phase 2. Each new crisis produces pain and secondary wounding. A lucky few manage to arrive at a plateau of manageable symptoms, but the next crisis can send your whole system into chaos again. Resolution In Phase 3, you may enjoy long periods of stabilized symptoms — even improvement — but you may also have relapses. As you come to understand that your condition is chronic and that you cannot go back to your pre-crisis life, you experience a true and deep grief reaction and must begin the active process of grieving the loss of your former self. You come to wrestle with the reality that you “can’t go home again.” You may find yourself wondering, “Who am I now?”, “What good am I?” or “Why did this happen to me?” If you’re like most people, you will need support during this difficult time. A counselor, friends and clergy people can all help you learn not to reject your new suffering self, but to have compassion instead. This is a painful but necessary period in which you struggle to find meaning in what has happened to you, and you discover what you can be in the future. Like many people, you may do this through creative acts like writing in a journal or taking up painting. You might look to a variety of sources for inspiration and wisdom, including spiritual traditions or the stories written by other people with chronic illnesses. Slowly you begin to rewrite your own story in a positive way, finding meaning in your experience. You begin to see that you have a future and as you re-create yourself, you learn to respect the person you are right now. In Phase 3, you begin to let go of your search for a cure and instead start to build a new life that makes room for your illness. As you begin developing your new identity, it may now become important for you to challenge the stigma you may have been experiencing. For some individuals this might mean speaking out from the podium, or confronting a boss or a spouse. For others, it means just refusing to pretend or keep silent about their FM. Instead they “stand with them-selves” bravely, day by day. At this stage, you may find yourself in different kinds of relationships, or behaving differently in the ones you have. You may change to working part-time, or you may go on disability. Phase 3 is often the time when some people permanently separate from the chronically ill. As one patient put it, “This is where your friends and family members — not to mention your clinicians — ‘fish or cut bait.’” However, this is also a time when you may be able to reintegrate people who left during earlier phases. Some of them have learned more about the illness and themselves, and are ready for a different kind of relationship. Integration In Phase 4 — as in Phase 3 — your physical symptoms may continue to improve, or you may relapse. By now you recognize the cyclic nature of your FM and no longer see relapse as a failure. Instead, you understand that it is another cycle that you must once again integrate. You now realize that integrating FM into your life is what constitutes your recovery. Psychologically you have united the salvageable aspects of your pre-crisis self with your newly claimed and respected self. You maintain this achievement through a constant commitment to allow your suffering, to meet it with compassion and to treat it with respect. This does not mean that life has become easy for you. Sometimes you may not be able to climb stairs; other times you may be so debilitated that you must use a wheelchair. You may still become mentally confused, especially if you do too much. Now you know that your daily life must include small acts of bravery in the face of stigmatization, rejection and even your own pain. But you stand with yourself. You have created a new “personal best,” a new ideal self to maintain. You continue to nurture the new friendships you began establishing in Phase 3. You may have also managed to reintegrate a few of your formerly alienated family and friends. Your newfound frankness and openness about your FM make it perfectly clear to people who you are now and some will admire you for it. Many people change their careers at the end of Phase 3 or during Phase 4. Because you now want to make your life as meaningful as possible, you may no longer be satisfied with just earning a living. You may want to work at something you believe has value and importance or you may decide to use your limited energy to participate more actively in society by volunteering your services for a cause that you support. Whatever your ultimate goals and individual experiences, the Four-Phase approach gives you a way to rewrite the story of your life and your illness. It helps you move away from the shame — even self-loathing — that so often accompanies the chronic illness experience. You can use this approach to help you escape from the exhausting effort of trying to pretend that you still can do everything you used to. Instead, you can construct a new life that takes into consideration the realities of your illness and its cycles of relapse and recovery. In the process of building a sustainable life, you will also create new meaning for your existence that allows you to see yourself once again in a positive way. Ultimately, you can integrate your FM experience into a complete and full new life. Even though FM may take up a large part of your time and attention, it does not have to define your existence. It can simply be one of the many aspects of your new self. Patricia A. Fennell, MSW, CSW-R, is a clinician, researcher, lecturer and the author of The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. The book provides strategies, skills and exercises for each phase of your illness. It is available at your local book retailer.
Tell me about it, can sympathise with you all, I have probable Multiple Sclerosis, Lupus, Fibromyalgia and as yet an un-named degenerative brain disease that causes clots to form in the small blood vessels of the brain, which then restricts the flow of blood....and boy do I have pain .....put it this way...on a sale of 1-10.....1000. I have been to a Chronic Pain Workshop held by the ICPA in Waterford recently and found it very interesting and beneficial. Keep up the good work, and to those of you that are inflicted with chronic pain, chin up, and best foot forwards....the only way is to try and stay positive. I have written a poem which you can find on the link below: http://www.ardkeen.ie/mswaterford/index.html, it may help you understand what I have gone through
Thank you Anon posted on 7th May. FMS does not appear to be recognised by Social Welfare. The examination has to be backed up with letters from GP about inability to work. Its very hard not to be stressed (me) or my friend in particular when the people that are relevant to decisions in your life have no understanding of the condition. I shall pass on your comments. Thanks again Maura
I had low immunity, caused by a virus which I contracted in my twenties - which doctirs could never fully explain. This was compounded by a series of stressful events and situations which for me resulted in chronically low thyriod. Maura - encourage your friend to get her thyroid checked (by an Endo, not just a GP) and look into the possibility of DHEA supplementation, which is believed to help the symptoms of Fibro.
It don't believe it is at all helpful to tell people with FM or CFS that you can't be returned to your pre-illness state. For many this just renews their sense of hopelessness.
Samanta thank you seems so trite with all the trouble that you have taken. I have downloaded your response and will give it to my friend. I will also get her this book. It would be great if I could post it on the notice board in the law library!! Thanks Again Maura
Back on April 15th, I posted a message that contained a comment regarding a private pain clinic that was as usefull as an ashtray on a motorbike. I would like to explain. There were three of us on this two week course which took place December 2003.As of five weeks ago my two new friends and I are still living a life of pain. It did not work for them or me. On the other hand I have met others(not many) that found these pain clinics very helpful. If anyone reading this has not tried pain clinic, you have to try, you have to try everything that comes your way. We are all similar in that we have this shagging pain but are still different enough in the fact that the same cure won't treat all ills. My message, keep trying. I have found alot of help with the 'Spinal Cord Neurostimulator' and would be interested to see if there are others who have found this form of treatment helpful.
I was diagnosed with MS , fibromyalgia as well. The pain is incredible. However... I later found I have Lyme Disease. More information can be found at www.lymenet.org. I suspect some of you may have that too. My MS has all but gone away after four years of treating lyme disease. My pain is on a level of occational and no more than level 3, unless I get hurt by the horses...oh yes, I can ride again! We have a group of 17 fm/chronic fatigue patients in my group, of them it turns out that 14 of us have lyme disease. (we live where "there is no lyme here!" )
Traci., I would be very interested to hear more about Lyme disease. 14 out of 17 may be a huge con-incidence or . . . ? I also heard that it's connected with arthritis and diabetes diagnoses? Is this true? I have always thought of it as an infection which could be treated by antobiotics and would quickly manifest itself in a very evere and noticeable manner if left untreated.
hi, i'm new to this country, coming from a small area in the united states. i have been dealing with lumbar back pain, with minimal changes on mri (mild DDD, L5 radiculapathy). this all started with a fall five years ago in which i broke my right leg. when i landed, i landed on my right hip area. over the past 5 years, the pain in my lower back and left leg, down to the toes has gotten way out of hand. being active before, and now choose carefully what i do, is becoming depressing. god forbid, if a sneeze! the Gp at home was treating me with low dose hydrocodone and soma, i'm not saying it relieved it, but made it tolerable. reading all the mails from here (ireland), i'm wondering if i made a mistake moving here. I will be seeing my first GP here, and now,,,i'm not sure what to say to him, without being labeled. I have been a very strong person my entire life. now, i'm begining to wonder, how strong.
I've just joined this discussion group, and would immediately like to thank Samantha for posting that extract from Patricial Fennell on the 4 phases of fibromyalgia. I found it spookily accurate of my experience of FM since it was diagnosed in 2002, I am now at the stage of realising that I can no longer continue my previous career and am taking early retirement.. On the one hand, the recognition of the accuracy of Fennel's analysis is encouraging and comforting; on the other hand [as some contributors have noted] it can make FMers feel that we are powerless on a pre-determined path. On balance, I think that there are common experiences, factors and symptoms, but everyone's FM is their own.. I have found cranial osteopathy and homeopathy very beneficial, after conventional drug treatments failed.
I have suffered chronic pain for the last 5 yrs. I had a mole taken off my right leg and they damaged all the nerves. I also did the 3wk Pain program in St. Vincent,s it was very good. But I have reached rock bottom again, this year in March I had a Rhizotomy in May I had a Spinal Cord Stimulator in and in June it came out and a second one in at this stage I had 2 wires in my back and it July these came out. I have also tried class 1,2,3 and 4 drugs and nothing has worked. I have had to give up work and move house. My husband has been my rock through all this. But things are really tough at the moment at times and keeping the good side out is getting harder and harder.
Here's a PS to my earlier post re what I have found beneficial for Fibromyalgia: I have been taking Magnesium and Malic Acid every day for a couple of years, and wasn't sure of their effects until I ran out and wasn't able to stock up for a couple of weeks. In that time my pain level increased greatly, esp. those awful stabbing pains that make you wince. So it would appear that Magnesium and Malic Acid tablets do some good.
There is some good information on www.integrativemedonline.com which is run by a Dublin GP who has a special interest in fibromyalgia/CFS etc and will certainly assess you as a whole person rather than a symptom. Also interesting is the website of Dr Sarah Myhill, a UK doctor who specialises in environmental medicine. Easy to understand articles which may be of help to some of you. There are doctors out there who will listen and are aware of these conditions but they are hard to find. It takes over an hour to do a full consultation for a condition like this. Seeing a patient every 5 minutes at 50 euro a pop is far more profitable! Plus, we aren't taught most of this stuff at medical school so it takes someone with a real vocation and interest to educate themselves and leave the mainstream. It can be quite isolating to set up in alternative practice.
To Anon (09/05/2005 10:53) Actually recent research: "Van Damme S, Crombez G, Van Houdenhove B, Mariman A, Michielsen W. Related Articles, Links Well-being in patients with chronic fatigue syndrome: The role of acceptance. J Psychosom Res. 2006 Nov;61(5):595-9." (done at the Department of Experimental-Clinical and Health Psychology, Ghent University, Ghent, Belgium) has found that: "Results indicated that acceptance has a positive effect upon fatigue and psychological aspects of well-being. More specifically, acceptance was related to more emotional stability and less psychological distress, beyond the effects of demographic variables, and fatigue severity." They said: ".. we believe that, given its strong positive effect upon physical and psychological well-being, a more explicit and systematic use of the acceptance theme might be beneficial for the majority of CFS patients. More particularly, acceptance may be an essential precondition for the therapeutic process, in which patients have to evaluate—and if necessary adjust—their former lifestyle. For many of them, this implies strategies such as activity pacing, aimed at adapting their activity level to the lowered physical limits imposed by their illness . This is particularly relevant giving the premorbid boveractiveQ lifestyle characterizing a substantial part of the CFS patients . Note that it is important that patients learn that acceptance is no sign of weakness or the end of a meaningful life. They have to learn to acknowledge reality and quitting efforts that are not working so that more workable and meaningful goals can be achieved." Unfortunately this acceptance is probably difficult for many patients because many professionals think CFS is more easily treatable than it actually is.
Its 4am and im reading all your sad stories on living with chronic pain. I was diagnosed with arthritis of facet joints spine 4yrs ago. I also have 2 prolapsed discs and bony outgrowths of joints. I was in dreadful pain i would bite my hand to endure the pain. In 2004 I had 2discectomies and a double spinal fusion L4 L5 S1 with lots of steel Bars and casings. I was so optimistic that this would sort me out however I have been attending pain clinic for last 3yrs. the surgery was unsuccessful I live from bed up to do simple tasks back to bed again, i take large amounts of drugs they calm the pain somewhat but not alot. I have had spinal injections to no avail my pain dr says he wont do any more of them as they havin no effect. I had 4rhizotomies in may had small damper on pain for a while but am having them repeated in 3wks time. I am lost I am at the end of the line my life is miserable. I try so hard to hide it I try to dress up put on the makeup but my body doesent carry. people say you look great you neednt tell me anything wrong with you now because i know theres not. My husband is great some days and sees what im going through other days I think Hes sick of it all, and me. I was a qualified nurse was always out walking and swimming game for anything now I'm lying aroung have difficulty getting around as i have left leg weakness also since surgery and need help walking. I hate my life wouldn't blame my husband if he leaves me. How come all letters from you out there are back 2005 2006
I was diagnosed as havng fm three only months ago. I've been trying to do as my doctor suggested and I've been walking. I always enjoyed walking so I thought it would be easy but now I'm in more pain than ever and I just can't even think of work. Is anybody else like that? I would be very obliged if someone could let me know if this is normal.
i was confirmed as having fibromyalgia 6 years ago before that dr's were telling me the pain was all in my head they very nearly convinced me then one sunday i was out in my garden with my husband when out of no where the pain got so bad i lost all power down my right side in hospital for over a week and felt i was getting the same blank treatment i was interduced to a pain/specialest he listened to me first time since my pain started i have still got pain but now it's under cntroll when it's gets to bad for me to manage i ring him up and he bring's me in to hospital for an injection it work's i can now live a semi normal life their is no cure for fibromyalgia but their is hope out their i have fibromyalgia for 10 year's now
Who diagnosed you ?
Have been to my GP many times with chronic pains and he just keeps changing my painkillers.
The last batch made me so sick !! severe head aces, vomiting, dissy to the point of feeling like I was gonna faint and shaking of my hands.
car crash victim examined in A&E discharged discharged with whiplash presented following week no xrays? new xrays examined admitted with c5 - c6 problems and transferred to nationl spinal injuries unit mater hospital dublin operation to fuse c5 & c6 pain unbeliveable had health nurse call dissapeared? no help pain daily GP questionable as result no faith! popping tablets to make day easier have no choice