Pain from suffering grief maybe another cause???

Whilst I am very fortunate to have 3 healthy children now, I still yearn for those I lost.

After my 1st child, I soon fell pregnant again and eventually went for my 5 mth scan. My husband and I had the misfortune to have the sonographer from hell. Basically, she sent us off to a side room to wait for an hour because she couldn't see babies head!! This is something we never can forget or forgive. Such cruel words. We were later seen by a Consultant,who looked at our scan and told to go straight to Kings College hospital in London. This was to confirm our Baby had anencephaly. We just went on auto pilot after this. We couldn't go on the Friday evening our little boy had abad chest infection and was going to the Dr's after the scan. Anyway there was no one to see us if we had gone. So, we had to wait until the Monday to take the train up to Kings. Long corridors we walked to confirm our fete. We saw Professor Nicolides. Wonderful man who very gently broke it to our babies spine had a neurological defect and that it had stayed open causing the scull not to form properly, thus not protecting her brain. The words i never want to hear again -'incompatible with life!'

We were sent off later on,back to our home, only to arrive at hospital the next morning to induce my labour. 2 days our little baby fought to stay, but eventually she was born asleep. They took her straight away before we could see her properly. The pain we felt when was born is indescribable. Later we were told she was going to be taken to Salisbury hospital for a postmortem. In my head i blamed everyone else for loosing her, not giving her a chance, but in reality she never had a chance, ever.

This was at christmas 1993 and I remember it all as clear as yesterday ( even with fibro fog ). From the labour to staying in a side ward where I was isolated from other mums thankfully but only to hear they're babies cry . Never will I forget that trauma and loss of not hearing our baby cry.

I later went on to have a bouncing baby boy whose recently turned 18.

However, for some unknown reason in 1997, I then went on to have an ectopic pregnancy where it ruptured in me leaving me a collapsed on a sunday morning.When the Dr arrived they called for an ambulance who took me straight up to a surgery ward thinking I have a kidney stone. I had a pregnancy test later that night which surprised me and my husband, but was told they couldn't check properly until the next day. Monday morning, 24hrs later because it had all happened on a Sunday came another sonographer . They confirmed I was pregnant,but in the wrong place and sadly my fallopian tube had ruptured on my left sideThey said I had to go to theatre NOW , to have an op as they were anxious as to how well u looked considering how I'll I really was. It was around this time I was told what a high pain threshold I had.

By now after having my 2 boys and loosing 2 girls possibly, I thanked god I was still here to look after them. Then it all made sense.I had seen my GP only the week before and randomly told, the 'pain' I was in then telling me I had probably had IBS. The swollen tummy and pains I suffer before the tube ruptured etc, this was my pain threshold was tested to the hilt

Many years later, 5yrs infant, 2003 I found out I was pregnant again, without trying and on the pill. Along came our healthy beautiful daughter who has healed so many raw wounds.

We will never forget the 22nd December.. How could we?? trying to celebrate Christmas having just delivered a longed for baby. Our eldest child was born on 28th December.

We lost our Danielle on the 22/12. Our 2nd healthy son arrived in the March '95, after a truely harrowing pregnancy, i couldn't believe he was ok until he was born and layin on my chest. Our last baby, a gift from above, a daughter arrived 29/12/03.

Now, I still bear the scars on my tummy of our other poorly baby whose a constant reminder when I look at my self in the mirror.

The end of my story comes a thought which I hadn't really connected before until I replied to another post.

I have never been truly well since loosing my 2nd child. I believe a part of me went with her and I have never been able to find it since. I never accept easily when someone has passed away or such like. It's like 'nothing else that happens will ever as bad a loosing her.'

Pain whether you can physically see it or NOT, is still pain. My eyes tend to show my pain that I feel daily. I wonder now, could this is when my fibromyalgia really started .

Sorry for such a long blog. but just writing this all down has been quite cathartic and given me a realistic, maybe possible reason for my pain <3

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  • I strongly believe that grief is the worst emotion to have to deal with,i too find death of loved ones both human and animal very difficult to cope with,unbearable even,it literally tears me apart,it's like i can feel the pain physically of my heart breaking, Hugs xxx

  • Dear heart,

    I feel your sorrow and your happiness. Grief is something many of us bear but to have gone on to have wonderful sons and a daughter I congratulate you :) Life is entirely about loving and giving in all its many splendid ways. I bet you are a wonderful mum.!

    The days when we remember are wondeful as time passes as they make us realise not just what we lost but what we gained.

    They are precious memories do your children know and understand I hope so . To you for sharing your wonderful story I send a enormouse hug ((((((((((()))))))))) xgins

  • Thank you Gins, Sorry if i went on and on. It was 2am and i was at the stage where typing it out, the heavy feeling i normally have, just started to lift. I think it help.

    Fortunately, i am blessed to have been able to a great husband and family who would move mountains for me to feel better. My baby daughter Danielle, lives on in my youngest daughter i am sure. We bought a cherry blossom tree after loosing Danielle because she was to early for a burial. She blossoms every year, late March/early April. This is when she would have been born bless her.

    We have watched her tree grow and grow in our front garden for the last 18yrs now. My children, understand in a good way why she is special to us, just as special as they are to us also. Thank you for taking the time to read my story. Warm ((((hugs)))) back at you xxx

  • My heart goes out to you, I am sorry for your loss and as I was reading it brought me to tears knowing that people go through such ordeals and can still function...

    I can't have children so I can't full say I understand, but enough to know that grief does (as I feel) make up a big part of (my) pain.

    I have had a pretty rough life with one thing and another, the last thing was my Mum died on 22nd Aug 2012, I now feel like an orphan..

    I started with my flare up in Nov 2012 (just as everything from Mum's estate had been sorted and dealt with) this flare up has been the worst yet, I am still in the flare up even now.

    Doc thinks it's been triggered by loosing Mum, I feel it has been the last straw and I am starting to believe that this pain is coming from the pain inside... Not saying it's the answer to 'what causes fibro' but I do think it's a strong link to the problem..

    I send you warm hugs and a kiss to hopefully make your pain easier. X

  • Andie hi, I had to reply to you as we have so much in common, like you i have never been able to have children and my Father died the day before your dear Mum and I too have felt completely like an orphan ever since. His death, I had thought, would have been somewhat a relief, as he was an extremely difficult, but it hit me so so hard and was, I think more difficult to cope with because of its unexpected reality.

    Again, like you, it sent my fibro into a massive flare, which only began to ease somewhat in February and then with the support of people here and others, I am making progress forward. The worst of the flare has passed but niggly pains continue and my GP definitely thinks the flare was linked to the stress of my fathers death.

    I wonder whether you have considered getting some support from Cruse or some form of therapy to help you through your grieving process . At my surgery we have a service specially focused on those struggling with bereavement which has, although at first I think I was so immersed in both the physical and mental strain, to make proper use of it, Now however, I am trying to move forward and as my therapist says, it is a long and very personal process and will take time.

    I send you heartfelt sympathy and hugs, together with a lot of understanding. Please feel free to pm me if you ever feel like it, an understanding ear and shoulder !

    Foggy x

  • Hi Foggy,

    So very sorry to hear about your Dad, thank you so much for your kind words too. I have sent you a message (((I hope I did as I am fairly new here on the site))) hope you go it?

    x

  • Hi Andi, thank you for your reply.

    We are right you know, about the grief. I am so sorry to hear that you have had to go through the loss of your mum. I can't imagine how painful that must have been for you.

    I don't know if your a keen reader,but a good friend of mine recommended a book called The Journey, by Brandon Kaye. Its about holistic healing and how deep rooted pain, that all of us have, manifests itself in some and not others.

    Her story helped me to understand how sometimes we need to take a good look at what we have gone through in our lives. What makes us be the one whilst we watch those around us take they're fitness and general health for granted.

    Take care of yourself and thank you for your kind words xxx

  • Hi Nattynoo,

    Yes your right, I think grief (of all kinds).. Could even be as big as a corner stone to this unforgiving illness we share. I also believe the mega super speed we all have to live these days, being larger than life, good at everything such as work/environment, high paced society, just life in general... If you can't keep up then you must be ill, placed in a box out of the way.. Sorry got carried away there :O)

    Thank you, I am not a big reader but I will defiantly give the book a go.

    I appreciate other peoples thoughts about things, it will be interesting to see Mr Kaye's side. No relevance but he has the same name as my fav Teach at school, he was a great Teach so hopefully this Mr Kaye can teach me too :O)

    Thanks again, you take care too.

    Big soft hug and a healing X

  • You have had a tough time. I've had similar experiences (Prof Nicolides is wonderful) and have recently been told that harrowing experiences can affect or trigger fibro.

    Have you had any form of counselling for your babies? Our local hospital also hold a Service of Remembering and Sharing (for all those who have lost children, whatever their age). I find this a good time to give to my lost babies, without any guilt, and everyone there are understanding and supportive. The service is for all family members, sometimes my children go, sometime not. Your babies were part of your life and always will be. It's good to remember your babies but when you want to.

    On the positive, you have 3 precious children to cherish and cuddle. I wish you all peace and happiness. xx

  • Big hugs natty, your harrowing experience brought tears to my eyes. The amount of suffering you have been through is horrendous and how you have coped and managed to go on to have more wonderful children must indeed be a blessing to you. It will never take away the pain of losing your dear Danielle under such ghastly circumstances, but it must surely bring you happiness day by day, which must go some way to easing your pain.

    Losing someone dear, whether it be parent or child is a life changing experience, one can never replace the lost loved one, but only somehow managed to find a passage through life which makes it possible to go on without them. I lost my mother nearly 21 years ago, yet remember the day and the experience of her death as if it were yesterday, prior to that I had thought I would never be able to exist without her, but I found a way, as you have, but it never heals that yearning to be with and hold or be held by the one you loved so much.

    You have my very greatest sympathy natty, and I know how my fibro kicked off more recently when I lost my father, and I would not be at all surprised if your experience was indeed the trigger for your fibro, though others with much greater knowledge than mine may have differing views.

    What ever the cause though natty you having thought all this through has brought you some clarity and as you say must have albeit in a painful way, been cathartic. I send you heartfelt

    hugs and positive healing thoughts !

    Foggy x

  • Well done Natty for getting this all out. Writing it all down can be a good experience. Someone else asked if you had had counselling? Even many years after the sad events counselling can help. My heart goes out to you. My Mum lost a baby after I was born and even fifty odd years later still talks about the experience sometimes. Hugs x spidey.

  • hi i am so sorry to read your blog i can understand your pain after losing 3 babies of my own and also losing my nephew at 14 months old. it is truly heart wretching brought tears to my eye your blog. i am so sorry but i feel that emotional pain does not help pysical pain. i feel makes it worse. xxxx

    kez xxx

  • Hi,

    part of one of my things is I provide online bereavement support to people so I'd like to share something with you. I have my pain escalating following the recent loss of my mum so I feel their is a very strong link between grief and physical pain, apart from the emotional aspects. There is also a part of bereavement that we don't actually register. We mourn the loss of a loved one but then there is another bereavement we go through but tend not to realise it because we are focussed on one aspect. The second bereavement is for the loss of our dreams, our hopes and the future we have been robbed of. You have been robbed, not only of your precious babies but also what you have lost through their passings..the loss of weddings, the grandchildren you may have had from them, etc. The scars physical and mental are always there and they bring pain with them because it is a constant reminder of what you have been through and are still going through. Does this make sense to you.

    Sending you the gentlest of hugs and to all of you who have suffered and still suffer the pain of loss

    Jillyxx

  • I really don't know what to say about the losses some of you have endured. I do not know the grief of losing a baby, I only had one and luckily is healthy after a difficult pregnancy and traumatic labor, I did not try again. To of lost her would of been the end of me but you must all be so strong to continue.

    I lost my father 5 years ago and this was the start of me going downhill. I was so close to him. I also had delayed grief as I was about to start my final year at uni and was determined to be strong for my mum and make my dad proud by getting a good degree.

    I did have counselling 2 years ago and the delayed grief finally came out. So I agree to going to cruise if you can.

    I wonder whether any of you who have lost babies, whether any of you have had your bloods tested for sticky blood, also known as HughesSyndrome. I found out a couple of months ago that I have it. Having multiple miscarriages and deaths are one of the signs as well as others including many associated with fibro plus others. It may be worth asking for a test.

    I hope this does not add to your issues.

    My thoughts are with you all.

    Jo

  • Hi

    I had a stillbirth at 28 weeks in 1992 due to pre-eclampsia where I nearly died, a very traumatic and difficult birth with my son in 1993, a miscarriage in 1993, my second son was born in 1994 but had a lot of complications after the delivery and a very traumatic miscarriage in 2005 where I lost loads of blood (sorry) and am still taking iron tablets 8 years later.

    I am a walking obstetric disaster and have been advised medically not to have more kids although I am now 44 so it is very unlikely. I don't know what triggered my fibro but if it is related to pregnancy and serious problems then in my case it is very likely there is a correlation.

  • Silverstar, you really have been through to much also. Lifes cruel, so cruel :-(

    At 43 myself, Your like me with the medical history problems. I now hate it when i go for a consultation and am asked about my past medical history. We went to see a rhuematologist and while we waited in the waiting room, we saw my consultant arrive. She had a suitcase and my husband laughed saying, 'that surely cant be yours, really??' Thankfully i never asked her, but my files are so large now i wouldnt be at all surprised if it had filled her suitcase lol

    Try some acupuncture or Reiki if you can. It draws the pain and anxiety out of your body and mind, and leaves you feeling less stressed and tight.

  • I'm so sorry for your loss, I don't know the pain of loosing a child, unfortunately I have not been lucky enough to have a baby because of very late diagnosis of endometriosis :o(, that's another long story...

    I really think that a trauma in your life has alot to do with FM, I really do, wether it be an accident, surgery, illness or loss of a dearly beloved. I really only got worse after I had had the 'swine' flu about 6 years ago. Yes I am almost certain it is down to any of those conclusions.

    Do take care and treasure your children, lots of love and gentle hugs.

    Vonni B xx

  • Hello, what a terrible time you have had, I fully understand your grief, I too have lost my first child , after waiting years to become pregnant, got pregnant again but my beautiful Daughter was born with Hydrocephalus and cystic fibrosis, I had another Daughter, but my lovely Husband was unable to cope with watching the suffering of our first born and he took his own life, my Daughter died soon after, within a year my Mum died, I started drinking , but I contacted Cruise and talking did help. I am still on antidepressants and having counselling, at times the grief is overwellming, and I feel alone. You are so brave to write about what you have been through, I have just started to write my life story, i am told it will help me , as i have bottled so much up. maybe this is whats caused the fibromyalgia. take care Ann x

  • Ann, i am so sorry. Again i have found after sharing my experience that so many members on here who have had similar pasts. Its so sad reading others peoples situations, it brings it home to me that we are all the same tightrope walk.

    We are all treading so carefully, and with every step that we take, we are trying not to cause another flare up. I am now starting to believe that flare ups could probably fueled by our emotions. Whilst they are real, and the pain is definitely not in our minds. I will still plod on taking my meds to assist in my moods and needing relaxation assistance. That will never take the pain away, the some form of 'healing' may help. This is my mission...for the time being anyway.

    Take care and sending positive thoughts to you xxxx

  • Bless you natty. Nothing can prepare us for the death of a child. I suffered a miscarriage of my first child in 1980 and I still think about her/him. My husband and I had waited so long for a baby and to lose one is soul destroying, so I can empathise with your pain. They say God only gives us what we can bear but sometimes I question that. I went on to have my beautiful daughter, Laura, in 1983 and she is the light of my life. She has been a wonderful support following the loss of my mum, my husband then my dad. I don't know what I would do without her. And now she has her own son, my beautiful 8 month old grandson, Rhys. I thank God for giving us joy back in our lives after so much loss, but I will never forget that first 'baby'. God bless you and give you strength and comfort hun XXXX

  • I am glad you have written because when we suffer pain a lot of people don't seem to really understand and it helps to have us people who suffer from pain who are more understanding to share things with.

    I truly agree that fibro and flair up comes from pain inside trying to come out and seems to wreck us somehow. I still wonder daily why I was a fit child and right into my twenties I had the stamina to dance my life away with never a day when I felt tired or ill but then when fibro struck me. I have lots of sadness and goodbye's & loniliness in my life which I think has brought about this terrible illness.

    My heart goes out to you. I have only 1 child & if I ever lost him I don't think I could cope. Hope life continues to give you more strength & no more loss x

  • I'm totally with you on this one. In 1994 I suddenly found myself a single mum to two beautiful daughters. After being subjected for 7 yrs to violence and daily verbal abuse from the girls father. I was 26 at the time.

    I then pulled myself together went back to college trained as a Reflexologist, Aromatherapis, and Sports injury therapist. Only to meet another replica of the last poor excuse of a man. Why did I put up with more violence and verbal abuse. God knows, I guess when your told it enough that your fat ugly, and no one will ever want you again, you start believing it. Unfortunately I lost a baby girl whilst with this nasty person who when I told him I was losing our baby, replied " I'm watching the bloody football you will have to wait till the games over before I take you to hospital" .

    Nice, so I went alone only to be told part of the baby hadn't come away. So them having to go thru a termination like opp. My point is in all this is like you I never ever felt the same again. And know for a fact that my poor body had just had enough abuse and trauma. And started to hurt. I believe that the pain we carry around in our hearts literally comes out in us the mind body connection.

    Just for the record I turn 45 this year and have two wonderful grown up daughters , and a 7 wk old grandson whome I adore.

    I've never married but am living with a kind caring man now. And after building my business up over 17 yrs although successful I've had to cut down by 75% as I can't work like I used to as the pain in my arms is too bad.

  • You have all given me a shining light at the end of an extremely dark and long tunnel. What caring, kind sufferers i have come across these last few week. When i get typing, my history flows onto the keyboard. It just keeps going, and going.

    At times when i look back at each trauma that i/and my husband has had to share, its like my body is the one to take it for all of the family. We joke, that if he knew was a medical mess i was, he'd have asked for a medical first before asking my dad to allow us to get engaged.

    At times i have thought, what did i do in a previous life to have to go through this now. As we have all gone through one hurdle, we think we are nearly there only to have to keep climbing yet another. Commonly known as the Fibro-Flare ups, and boy when they hit you, they really hit you.

    Whats disturbingly worrying is that Fibromyalgia has now become such a widespread illness. Unfortunately, We all know doctors/GP's just don't know enough about it, so you have to keep pushing your way through (just the norm for us) to get recognised by a pain specialist consultant.

    I am fortunate in one way, my own Pain consultant suffers with it also. He knows what we deal with day to day. But in reality all he can do is encourage you to work with different strategies to help ourselves with positivity.

    One last note.

    Due to my children having seen me struggle these last few years (6+ actually) they have seen how i have been left after taking various meds to cope or distance the aches. I have a lock up cupboard, probably looks like a pharmacy. Its stores phosphate codine to Morphine tablets and patches, and more. They are my strength now. I know could easily slip back into taking them sometimes, but what keeps me from them are my children. They have seen enough now.For now, i plod on with only the pain showing from my face and eyes.

    Nite, nite to you all, i think the amitryptaline is kicking in and iamy get some sleep tonight.

    Hugs to you all and hope you sleep well xxx

  • Hi Natty,

    I know what it is like to lose a child as i lost my 1st and i think of him everyday as it was Valentine's day which is a date that is'nt the most romantic for me!! Grief definitely affects our Fibro as each time i've lost a close member of my family or friends it triggers a change.As i also suffer from Ankloysing Spondylitis, and severe pains in my knees which i get injected so i can get around and in my feet as well as i have Plantiar Fascitis in my heels.Within the past year and a half i've had 6 attacks of Shingles which have left me totally drained....and i know this is brought on by shock, stress etc as i have a seriously ill husband who i almost lost a month ago with Acute Renal Failure. Life is so hard but we have to put on this brave face for the outside world even though inside we may feel like crawling into a hole.As for GP's they have'nt a clue but i have a very understanding Rheumatologist who is quick to ack an try to treat my conditions. It has been an eye opener from i joined here to read other people's storys!! I wish you well and keep your chin up.

    Alanna54

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