Hello

[RayB]

Hello all, just to introduce myself and tell you my story.

My name is Ray, I live in Belfast.

I have suffered with fibromyalgia for about 10 years now.

About 16 years ago I had to give up work to move back home as my father could no longer manage mum who had Alzheimer's, mum no longer recognised dad as her husband and he could not understand. He was profoundly deaf and that really complicated things.

Anyways, after about 6 years of sleeping with one eye open in the next room to mum (dad hidden at the top of the house so mum didn't go off on one)

I developed excruciating pain in my left arm, through the shoulder from the neck down,, it just felt like something needed pulled in my neck.

I went to a Chiropractor and yes it helped but after spending over two thousand pounds I could no longer afford his treatment.

Eventually I went to the Dr about 4 years after things started ,,the drugs began, paracetamol, Ibuoprofen, diclofenic but no one mentioned what it could be not even the chiropractor had mentioned fibromyalgia. It was not until I went along one day and got a nice young locum, it was the first anyone had mentioned the possibility of fibromyalgia and that the constant stress of caring for mum most likely brought it on. It was relief just to have a Dr mention the possibility of a condition with a name, instead of looking at me an shrugging their shoulders.

He sent me out with a script for Amitriptyline I got the tabs and eventually after about two weeks I was brave enough to take one, the relief was great and I got over the not being able to move on the drug after a few days.

I reasoned that if it was the stress that brought the condition on then when I the stress was lifted the fibre would just go again,, not that I was wishing mum dead, I loved her dearly and miss her so much (tears!!!!!) I worked on not reacting to lives stressors but I am actually a very calm person anyway.

A few weeks after Mum died, Dad was diagnosed with Small cell lung cancer, he lived for four years after his diagnosis and we mucked through together,, I remember one day dad breathless form his condition brushing the floor and me feeling so bad, but I just hadn't the energy to help and was so uncomfortable. He knew there was something wrong with me but I always tried to hide the fact. I don't talk about the condition to friends, they just don't understand, there is nothing wrong with me in there mind.

I get nothing done in the house, I go to get something and by the time I have got there I can't remember what it was I wanted to do.

I leave things sitting out to save me having to get down into a cupboard to look for them as the effort is just to much to even think about.

My muscles wear out and tighten up with very little effort.

I just can't do things for any prolonged period even something as simple as hold the phone up my arms just die.

Even reading a book causes me so many problems.

Besides the pins and needles in my hands my finger nails feel like someone has beat them (hard) with a hammer, and Oh god if they get cold the pain is unbearable.

From being a person who never stopped doing things, Running, Swimming, Cycling, Camping, Sailing, Woodwork, Piano, Gardening, French Polishing, Upholstery.

Just getting through the day now can be so trying, I get out of bed and trying to get to the bathroom is agony. By the time you get things going you are running out of energy and having to lie down again. The backs of my legs tighten up and the knees burn, the hips, back, shoulders and neck ache. The physio gave me stretches for the neck and they irritated it all the more and the acupuncture didn't seem to do much. I use magnesium citrate and I don't know what it dose but I am definitely a bit more comfortable on it.

It is not a life it is an existance and I really wonder about tomorrow, I know I have deteriorated much over the years even tho the all knowing Dr (with picky use of words tries to suggest it is all in my mind) say's it doesn't get worse. I was on Lyrica which was great at first but stopped working after a few months.

I wish I could find a Dr who has the condition there is bound to be some out there I know it is not in my mind, I just avoid going near the Dr now they don't understand there was one Dr who sat and told me to go running and swimming every day,, and I just sat there down trodden and took it,,, but I didn't go back near him, the good ones are bad enough !

On reading through this it's a frustrated rant but I am going to post it anyway maybe someone can relate to my experience.

Best Wishes, Ray

[Kittyletmein]

Hi Ray, I am so sad for you having to manage both your parents illnesses when you are ill yourself. Having a mother with alzeheimers I know exactly the stress, mine has had to go into care following 8 yearss of trying to take care of her, her medical conditions became very complicated. During this time my dad passed away and my father in law and my elderly mother in law was demanding. So I am going to tell you what I was told by the mental health nurses. "You have been amazing, even mental health nurses would find it impossible to look after their parents and the have received training and you must always put your health before anyone elses otherwise you cannot help those who need you and never feel gilty about it"

You are absolutely entitled to let off steam and this is the most wonderful safe place and great people to do that.

The thing I have learnt from reading and discussions on this site is that FM has to be managed in several ways, the right medication, cbt, and light exercise that you enjoy and the support of friends.

Like you I had problems with physio exercises so just did what I could but found gentle movement in a hydro pool for 15 th 20mins 3 times a week works best and despite not wanting initially to let friends know I have now shared the information on this site to educate them and thereby help me.

We do not live alone on this planet and friendship is so important its is about sharing your fun times as well as your pains both emotionally and physically.

I am sure you would do this for your closest friends ifthey disclosed an illness to you.

You sound like like such a lovely, caring person.....give yourself some of that.

Thinking of you and wishing you a better day tomorrow

PLMI x

[RayB in reply to Kittyletmein]

Thank you PLMI.

Would you mind if I called you Kitty?

[Kittyletmein in reply to RayB]

If you wish.

[RayB in reply to Kittyletmein]

The last cat we had was a Chocolate Burmese, she was a great we thing, she had so much personality and could practically talk. Called her Chloé after the perfume now days when I hear a mother call their child Chloé I think "it's a cats name!"

The is only to help me give some association point so I can remember you easier.

[Kittyletmein in reply to RayB]

Thats lovely, thank you.

These two kitties are Lily and Lulu, sisters just over 1yr old abandoned at birth and the have been such a joy. Lily meows all the time when she arrives with presents, moles, mice and voles, 3 beautiful dragon flies 2 alive, yesterday and today its frogs and toads, she doesnt stop telling you untill you have looked at it an praised her. Then often she will snuggle right into me, gets very jealous of her sisters attention. Lulu doesnt want too much fussing but she shows her delight by catching my eye and streching out fully on her back then proceeds to roll over via her left the the opposite direction all the time checking if I am watching. Reason why they are so special is they just make me laugh at their antics and their play fights and this past year I have had lots of time laying down and they have both comforted me. Hubby gets a cuddle too.

Kitty

[RayB in reply to Kittyletmein]

I spent many years working in a veterinary practice.

Of all the cruelty I seen during that time poor cats seemed to get the worst deal. With dogs it was more often a general neglect but so many people have a bitter hatred for cats.

[rosewine]

Hallo Ray

Welcome to this lovely, friendly, supportive site. I was so sad to hear your story. I am absolutely sure that stress does sometimes have a part to play in us getting this illness. I look back myself and realise that it might have been trying to look after two terminally ill people my mother and a friend whilst working and having really only just recovered from having to help my father in law alot that I had the first signs. I then had a bad fall and my husband had to give up work because of his health and I think one thing after another just tipped my body over the edge. It seems to me that you did mange brilliantly even though you were suffering yourself. I too was an extremely active person and walked for hours and swam quite big distances each week and did all my own gardening in a very labour intensive garden before this illness as I think alot of us did and that seems quite a common theme amongst many of the people in this group, None of us are doctors but the way you describe the problems with your hands sounds very like Raynauld's disease and that could be worth investigating. It is a pity that the Pregablin stopped working for you some people find that they do have to keep on upping the dose. Pregablin does help me but I have only been able to tolerate a certain dose before I feel so drugged up I think I would prefer the pain. Like you I am on and have tried quite a few pain killers but they have had only limited effect. I know you seem to have lost faith in GP's (I can't say that mine is brilliant) but have you ever had a referral to a Pain Clinic as a lot of people on this site have found that they have been given very useful advice by them. Don't apologise for what you think is a rant as it is only normal when you are so ill to want to let off steam and we all absolutely understand as it could be our turn to do it tomorrow. Our mother site gives some really valuable information on fibro and is certainly worth a look at. Anyway welcome and I hope you will find this site helpful. x

[RayB in reply to rosewine]

Thanks Rosewine. The only med I wouldn't be without is the Amitriptyline it really helps with the shooting pains that move around. The Lyrica was good at first with the hard burning type pains,,, I was up at 450mg a day when I realised it was no longer working but the drug it's self was nasty and really made me feel like shit.

How do you feel about the name Rosie ?

[rosewine in reply to RayB]

Sorry the Lyrica didn't work for you alot of people find that it can be a nasty drug, putting on weight and leaving them absolutely zonked. Rosie would be fine by me, I used to call our motorcaravan that.x

[RayB in reply to rosewine]

Rosie is a name of great affection but it's only to help me give some association point so I can remember you easier.

[Highroost]

Poor poor you. I don't blame you having a rant. I want to do the same much of the time but feel I can't cos people aren't really aware of how horrible it all is. Have had a hell of a day today but can't sleep despite a sackful of drugs cos I hurt so much. I have to sleep with high pillows cos my husband complains otherwise that I snore and keep him awake but it is so uncomfortable on my head, shoulders and neck I can't relax at all! Life is not good is it! Don't know what else to say except keep talking on here cos at least here you get some understanding, sympathy and also good advice! Look after yourself, good vibes sent to you so hope you catch some!

[RayB in reply to Highroost]

Thanks Highroost. I have to be so careful with head height when sleeping or it can really play havoc with my neck pain I use a cervical pillow and have a big bath towel folded in four to raise it up slightly. I put a pillow in front to stop me rolling onto my stomach as that plays hell with the neck.

That propped up on pillows trying to sleep sounds barbaric,, he obviously dose not understand,,,, have you tried explaining to him with a ball peen hammer they are good for getting through things! 100 years ago Mum liked to read in bed and Dad grumbled about the light being on when he retired she went out and bought a new bed with his new found wealth,, 4000 pocket springs. He hated the bed before it was delivered and even more when it arrived and took himself into the next room the first night and stayed there. Out came Barbara Cartland again and the light was on half the night,,, she said it was the greatest investment she ever made.

You have got think outside the box to fix some problems!

I think I might call you Chick !!

[TheAuthor]

Hi RayB

I have read your post with so much pain and sorrow for what you have been forced to endure, and I genuinely hope that you can find the answers that you so desperately and desire and deserve.

All my hopes and dreams for you

Ken

[RayB in reply to TheAuthor]

Thanks Ken. I try to see reason for or in everything in life but I just have none for this bloody fibro it has efectively turned my life into an existence.

[Hidden]

Hi RayB,

Having read your post I think you are allowed to grumble You have had a lot to contend with and staying positive in the face of it is an achievement on its own.

Besides this site, which is full of interesting people and answers I know there is a Fibromyalgia support group in Belfast and another apparently really good one in Bangor if you wanted to talk to people on a face to face level who are in similar situations themselves I am from NI too and had been told about these groups, just too far for me to drive to so I stick to online, and a better site I couldn't have chosen. I hope you find some comfort

[RayB in reply to Hidden]

Thanks Tiredalot40.

I know theres is a group in Belfast, to be honest I avoided it,, not sure why but it doesn't feel right for me. This forum is the first contact I have made with any group. I think I am still just trying to come to terms with accepting that I am most likely going to have this for the rest of my life. I long held a belief that it would just go in it's own time when I was not under so much pressure and had some time.

[Hidden in reply to RayB]

I certainly hope that is the case for you.

When I was first diagnosed I was told that it may well go away again. I was also told by a fellow sufferer that it was as much in the mind as in the body...not sure exactly what she meant, so I have taken it that she meant it is up to each individual to keep positive and not let your head get away with thinking doom and gloom (it wasn't on here I hasten to add)

This forum is good for keeping spirits up and distracting you from the nitty gritty of living with Fibro as well as being very informative. Personally I find the change in lifestyle hard. The not being able to do things I found no problem before

Like you I am on Amitriptyline but don't find it helps with the pain but it is great for helping me sleep better, I would have only got 2 - 3 hours if I was lucky, now I get at least 7, happy days

There was a debate and a poll on people with Fibro getting worse or was it a case of other ailments causing a decline in health the longer you have Fibro, or a bit of both. You may find that interesting

[RayB in reply to Hidden]

I think so much of our health is is our outlook. I mentioned my belief of the fibro just going to mums Dr one day and he said "Ray,, I haven't seen one person that has happened with". I can hardly tell you how I felt at him say that, it was the last day I seen that Dr. Now I realise he was only talking from his history as a Dr, and perhaps thought that I was desperately clinging to some faults hope and wanted to help.

I can say without doubt that for me the fibro has got worse over the years,, the pain is much more wide spread but it's the exhaustion.

I was reading a bit Ken posted about fibrofog he described it beautifully,, strange you know there is something wrong but until you see or hear it described by others you don't know what's wrong. I often joke that I caught Alzheimer's of mum to excuse my mental (fog) state,,, but I know i don"t have that.

Ken described, How one thing leads you to another and you end up getting nothing done,, I thought it was only me that was like this and that it was a situation of my own making. I am sorry I didn't join this site some years ago, it may have saved much unexpressed self blame.

[Hidden in reply to RayB]

When I first joined I found it amazing at how many people felt the same way I did.

We are all having a virtual day in Kos, being teleported, join in the fun and get to leave it all behind

[lilian68]

hi rayb reading your story you looked after your parents even though you were ill yourself you are a really caring person you feel the same as all of us with fibro why me as it totaly chages your life and is hard to cope with you wish you had your old life back but can only make the best of what you have got this is the best site you could have found as you are among fibro friends who understand and help you keep posotive.

[RayB in reply to lilian68]

Oh Lilian,, I have so often thought, "what the hell have I ever did to deserve this" Most of my life has been about assisting others,,, when I think of it, I end up in floods of tears. Then I think, well I suppose there are others worse off than me. I had a sister who went deaf when she was 11 then her head started drooping and she couldn't use her hands. By the time she was 13 she was on a Cuirass pump 24 hrs a day to assist her breathing. A friend bought her a rag doll clown called Simon the sad clown. It had a big glass tear. One day she said " I can see his tear shining in the dim light during the night and it reminds me that there are people worse off than me."

I still have Simon, but we lost Rosemary when she was 17.

Ray

[mitziblue]

So Sorry Ray!!! Bless Your Heart!!! I've been through a lot of things too. You really need to find a caring, compassionate doctor. Believe me it's not in your mind. If it were only that easy. I pray that you will find the help that you need for your suffering as no one should have to suffer so with all the medicines out there to help at least make it bearable!!! Hang in there honey!!! xxx Mitzi

[RayB in reply to mitziblue]

Mitzi,, I think it is just life,, In my more philosophical moments I often think of life as a series of challenges,,,,, lessons might be a better descriptor. We can meet them head on or run away. When we run we do not learn anything,, we do not experience or progress and life has little meaning. I don't think we will find a meaning to life in Emerdale or Channel One but who knows.

At the end of the day I don't really want drugs I would just love to be well again,, but Dr's deal in drugs not magic.

Perhaps if someone knows a good witchdoctor they would make a recommendation, I think I would have more faith in a witchdoctor at present,,,, but then again I might just giggle if he shook his stick at me !

[Hidden in reply to RayB]

Hi have you been referred to a rheumatologist?

[RayB in reply to Hidden]

P1PP1NS went to a rheumatologist about 7 years ago besides the examination they didn't do anything besides a referral appointment to Neurophysiology for tests. He said Fibro was the likely diagnosis but was a diagnosis of omission. I got a second appointment that I missed because other things took over with mum and I forgot about it. I asked my Dr about 9 mths ago to be referred back to rheumatology and he was very dismissive. It is so frustrating!

[mitziblue in reply to RayB]

I'm so glad your spirit's are up. It is better to laugh than cry any day sweetheart!!! I didn't take much of anything for many, many years but I finally got to a point where I couldn't go on, I was having tension headaches with severe pain in my neck and shoulders, I couldn't even lay my head down on a pillow I was so knotted in my muscles. It went on for six months and with little to no sleep I caved and went to the pain clinic. My medicine only helps the pain, as I don't take it for a buzz because I want to participate in life as much as possible. But honey you might get to that point. I pray you don't get any worse. If I hear of a witchdoctor I'll let you know. lol Hang in there honey!!! xxxx Mitzi

[RayB in reply to mitziblue]

I can relate to all of that Mitzi.

[Izumi]

Hi Ray! I was diagnosed with Fibro about 2 years ago. I was advised to go to a doctor under 40 and she ran every test imaginable to rule out any other problems. Now extreme pain in my head means I don't think I have a brain tumour etc I seldom write on this site but get comfort from reading it every day; I know I'm not alone. I live in Bangor and just today I rang to get the number of the support group. It has taken some time to realise I would not receive support from my family and friends as they don't understand. Maybe you should try it even once. Good luck!

[RayB in reply to Izumi]

Thank you Mariko. I don't even mention it to family, I have an aunt who is an old nurse and an intelligent individual,,, I thought she would have understood, I tried explaining to her at one time. She just looked at me seemingly without much comprehension. I gave up trying to tell anyone about it including my closest friends, they just cannot relate to it. So I understand your realisation of not getting support from family and friends.

I might try going to Bangor sometime, when do they hold their meetings?

Signing up to this site is helping me realise so much mainly that it is not in my head and there is so many others out there with the same problems.

Ray

[Izumi in reply to RayB]

I know the meetings are on a Wednesday in some church hall but no details. I will let you know when I get some details.

I was also told it doesn't get worse but it has with me, the pain that is. I swim and do yoga even though it leaves me tired and sore. When I walk out of the gym I feel really good!

[Cefn48]

Aww love u thats lot to put up with x I looked after my mum till she past on too x but only got fibromygela tjis year and my whole life has turned upside down x least thats one thing your never alone on here xx chin up lots hugs shell xxxxx

[RayB in reply to Cefn48]

Thanks Cefn48.