I have what I can only describe as the worst neurological left sided body pain, thanks to receiving a TBI which I sustained in an RTA that wasn't my fault on the 9th April 2013.
The driver of the other car who had fallen asleep & hit me head on, walked away without a scratch which makes me feel even worse...
I have a personal injury claim going through but as many of you will already know on here, they take for ages to finalise & because I have so many different injuries, my claim is going to take years before I get any sort of settlement.
Anyway that's not why I'm posting, I'm sending this post as I feel very misunderstood & fed up of people saying they know/understand how I feel when they have never had chronic pain so, can never understand how I feel, but I know they are trying to help & make me feel better, it's the ones that seem to think by now I should be all better & must be putting it on or have got so fed up of me & my terrible pain they have just stopped bothering with me....
I've tried so many different pain meds, I'm seeing the pain team at the hospital & also see the pain psychologist, I feel I'm trying it all but loosing hope that my pain will ever get any better or that I will have any kind of life at all ever again...
My partner of 7 years which has lived with me for about 4 of those 7 left me about a month ago & although still visits me when it's convenient for him he has left me broken hearted & only made everything 10 times worse for me.
My 19 year old daughter has moved back home to care for me & help out as my poor 14 year old son can't manage it all on his own. I think that when my partner left & the fact I hadn't slept properly for about 4 weeks & my pain was through the roof & I felt guilty that my children are now caring for me when I should be looking after them that it just all got too much & tipped me over the edge so I tried to take an overdose one night when my son was staying with his dad & my daughter was staying with her boyfriend for the night.
My pain levels have been so unbearable & all I could think about was how much better off everyone in my life would be without me around....
Anyway my attempt failed & I didn't succeed. Which ended up with me spending a week in a psychiatric unit. All I did for the whole week was sleep all day and all night, I only left my room to use the toilet, wash & maybe eat. It was horrible & I didn't belong in that sort of environment as although I admit I do need help, that was the wrong sort of help I need.
I did feel better for the sleep & the time I had to think about everyone I love & would of left behind if I had of succeeded with the overdose.
But all that went out of the window as soon as I returned home again, my pain this week is so terrible and I cannot keep on top of it with anything.
I've tried my distraction meditation, the breathing technics I've been taught, listening to my body and not over doing it all but, I'm so low again with this never ending pain and not having a pain relief med that works even a little, that after 14 months I just can't see any light at the end of this shitty tunnel & I'm not sleeping again at night. I wish I could cut my bloody leg off it hurts so damn much. My poor children have to watch me crying in pain begging for it all to end and I'm now just so empty inside I just want to give up.
My life is in such a mess from one stupid person that should of pulled over but didn't, so I'm left with the damage he caused to my body for the rest of my life.
I'm told I have to except it but I just can't, I'm so bloody angry that everything has changed so much in my life & the worst thing is that I was such an independent person who did everything, I never asked for help & have found that one of the hardest things is to ask people for help with the smallest of things.
Along with the left sided neurological pain I also have CRPS, my hearing was also impaired so now I have to wear hearing aids, my eyes were damaged too, so now have glasses as well. I only turned 40 last July but feel about 80. We never had the celebrations I had planned for my birthday as that was just out of the question. Instead I purchased myself a wheelchair so I had a nice comfortable one & could return the one we had on loan to us.
I just need some real people that really understand what I'm really going through, I've been coming on this site reading all your posts & it's the only place I feel I can tell you all of this without being judged or being told to stop over reacting...
I have replied to a few people on here but never told my story until now.
I feel so backed into a corner & don't know which way to turn...
Pain is an unforgiving uncontrollable condition that sucks the life out of its sufferers & it unfortunately doesn't have an on off switch so I'm stuck with it 24/7.
Please help if any of you out there have any ideas how I could possibly make my life just a little less painful, as if I carry on like this, I don't think I'm going to make it though to the other side of this dark tunnel, that's if there is one.
Even if you don't have any suggestions, thank you all for taking the time to read my post & for letting me let go of all of this negativity, where you all understand what real pain is and how it affects a persons life.
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dora21
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Hi Dora21! Just read your post I'm truly sorry this happened to you...
What you are suffering sounds terrible! What is a TBI? Sorry to be so ignorant. I hear how angry you feel. Pain is so personal isn't it. You feel that no one can share it with you. Are you confined to your wheelchair? Has your doctor suggested steroid injections to block the pain? I have heard that they can work but have no personal experience of them. What else has your doctor suggested besides the pain clinic? Have you been to the pain clinic yet? I am glad you have found this forum to let off steam. As for asking for help - I imagine people are only too glad to be able to do something for you when they cannot take the pain away. Can you accept their help?
Hello, TBI is short for traumatic brain injury. I was hit so hard in the accident that my skull took such a knock that it broke my neck near the top, I'm lucky it never damaged my spinal cord... I have lesions on the right part of my brain which is causing most my problems on the left side of my body. I'm not confined to my wheelchair but walking is so painful & if anything touches that part of my body it's causes me the most excruciating pain.
I've had a lidocaine infusion that didn't work. My legal team send me to the London pain clinic in Harley Street once a month, I've just seen him last week & he has prescribed ketamine but, apparently it's on a long term shortage in this country unless you can afford viles of 10 for £300 a time & I'm being told to take 8 a day..... The other thing I've been offered by the pain clinic is liquid cannabis, so it looks like I'm going to have to try this. Long term we are looking into an op called deep brain stimulation but it's the pain I'm in right now that makes life so terrible & I can never see an end to any of it. I do except people's help now but still find it very hard to ask or except it.
The first thing you should do is pat yourself on the back for telling your story warts n all. It is horrendous what happened to you. There is a book which I'll find out the name of and tell you (not home at the mo). But time for some tough love: don't let the b*****( who did this too you ruin your life more. He caused this but don't give him the satisfaction of your continuing suffering (I know he doesn't know what you are going through byt don't waste your energy on him). As for your partner well where do I start?! You have suffered 2 loses, 1 the accident and 2 your partner so it's going to take time. I know you are seeing a psych but see a CBT counsellor too. Also try a TENS machine as they are great for nerve pain. Have you tried gabapentin or amitryptiline? I'll write more later as I've got to go now xx
Hello, I do have a tens machine & it sometimes gives me some relief. I have tried gabapentin & amitryptiline to name but a few. I do have a CBT counsellor too. You are so right about not letting this all rule my life. It's all so very hard to except but I know somehow I must...
I just wish I had some energy left inside to fight. Thank you so very much for your kindness & I look forward to finding out what that book is called. xx
hi I was also involved in a R.T.A..some 25 years ago and sustained over a hundred fractures and was in and out of hospital for several years I have also been in constant chronic pain and I am on morphine patches of 250ml which last about 72 hours so I know where you are coming from try asking the pain clinic for morphine patches or ferntanel patches of a high strength at least 150ml tell me how youm got on will wait to hear from you to see how you got on
Hello there, thank you for your kind reply, I have already been on fentanyl patches & was on 150 micrograms per hour which lasted 3 days before needing to be changed. My doctor put me on these & when I went to see my pain doctor he was horrified I was on such a high dose with all the other pain meds I was on, so made me slowly come off of them as they weren't really giving me enough relief & the long term side effects were too high I was told. It's like everything I try, nothing works, I'm loosing faith & all the pain doctors look at the long list of meds I've tried & either say we are running out of options with you or like my lovely private pain doctor says, I'm a very complicated patient that's why he has now mentioned liquid cannibus to try. Maybe if I give this a try I'll be so out of it, side effect wise I'll be none the wiser to my pain.....x
No words will make you feel any better, I know , I have been in pain for years it started at 18 I am now 55 , there is not a day or night I get any relief, like you I have had enough life is for living , this is not living , but , maybe there is so think some one can do , Drs. say life with it why should we , have you asked the local funding of the hospital pct for money for any treatment there maybe that the Drs. won't mention be use of cost you might have done all of this . You don't want to here about my pain so I am am not going to tell you as you need help , I can't give you any other advice just look at your children stay for them please , I do with the kindest re guards may be talk more later Deborah
Hello Deborah, thank you so much for just knowing how shitty life really is, it's so very hard to see the wood through the trees sometimes and unless like everyone on here know what real 24/7 pain does to you and your quality of life, no one gets it, some just call me selfish because I don't want to feel like this anymore & want out for a want of a better word to it all.... I feel the people that call me selfish are the selfish ones... The way I feel now is if I had of died in the accident that day I wouldn't of suffered, I wouldn't of known a thing, as I have no memory of anything about any of it. My loved ones would of obviously had to deal with the upset of loosing me but, after 14 months they would by now be getting on with life I hope & I wouldn't of had all this awful pain I've had to deal with since that day & my poor loved ones who also live with my pain daily it drains us all & I just feel it would of been best for everyone if I hadn't if made it.... How shit is it to feel like this about life. It makes me cry so much sometimes feeling so helpless to the relentless shit of a life I now feel stuck in. Thank you for listening & look forward to talking more soon xx
The pain that you are experiencing is real & don't let anyone tell you otherwise. I'm so very sorry that this has happened to you and especially your partner leaving you. As far as your partner is concerned, time is a great healer but at the moment I understand what you're going through. Its hard to understand everything yourself let a lone anyone else. Neuropathic pain is, as far as I'm concerned, the worst pain you could have and I've had mine for over 25yrs! Have you tried amytriptalene & either gabapentin or pregablin? These can help to ease the pain. A tens unit may help as well, I use 2 everyday as well as an internal neuromed Stimulator which is surgically implanted along with a small battery pack. This is placed directly onto your nerves in your back and it acts as a internal tens machine but much more accurate and a higher pain blocker than a tens machine. I was one of the first to have it done in the UK and it's thrown me a life line to take the edge off my pain. However, it doesn't get rid of it but helps to make things more bearable at least.
Hang on in there and happy to discuss with you further if would like someone to talk to about anything or everything. Everyone here is willing to help and you're not alone either. You shouldn't have had to go through this in the first place but now it has don't let it break you easier said than done I appreciate! As I said ive had my neuropathic pain for over 25yrs and still struggle to accept it on times. It's easier to say to people if they ask you to say, 'yes I'm ok thanks, you?' I say this because most of the time it's a polite response as they don't really want to know how you are! There are all sorts of pain relief out there which can help you manage your pain and I think ive tried most of them! If you want to discuss further I'm happy to but don't want to bore you with my story unless you want to know that is. We are here to help you though so stick with us. I hope this gives you some comfort at least & feel free to contact again. K
Thank you so much for reading my post & replying to me. I have tried all the meds you mentioned & many more, I have also got a tens machine which I use a lot of the time, at present I'm seeing my pain doctor who is based in Harley Street, which has all been organised by my personal law firm. We are looking into deep brain stimulation which sounds very similar to the internal tens type of machine you have, only that it's in the brain and not your spine with the battery unit placed somewhere near your collarbone. I would be very interested to hear more from you regarding this as I'm really desperate now & feel that this is the only option left to me now as so far none of the meds I have tried have had any effect at all on my pain. Hope to hear more from you soon, please don't think by telling me your story you would bore me, I wouldn't say its nice to hear other peoples stories that are similar to mine but it does make me feel less alone, so please feel free to share your story with me. Valerie.
hi I m pat wife to Steve P, I have trouble with my left hand side also, I understand the "wanting to chop my leg off" Had to put up with it for 17 years so far and finally got morphine which is the only thing that helps. Docs were very difficult about it. Other help meds maybe Gabapentine, nerve blockers. We have 3 disabled people in our home and we try to laugh off our problems, not always successfully. Life is worth it, its just sometimes feels like its not.
Hello there, sorry to hear about your pain, gabapentin was the first pain med I was put on, I thought at the time it was going to "fix" me, now I know this is not the case & there is no fix me wonder drug, I have tried so many & at present I'm on keppra, oxynorm, & flupirtine the latter one being an unregistered pain med in this country & only available through my private pain clinic & even that's not worked... I'm now being offered ketamine or liquid canabis which my private pain clinic are having trouble getting hold of for me to try. In the mean time I just struggle on, to these clinics a day or a week is nothing, to someone like us in horrendous none stop pain that wait might as well be a lifetime...
So very sorry this has happened to you and can totally understand your despair. My daughter suffers in the same way after having a C-section four years ago. She has also been through hell and back and suffers depression when she thinks about what she has lost in terms of the life she led. She had a two year old and a new baby to care for (well we cared for them for a while) and it was truly horrendous. What has helped her though is focusing on being creative and she now makes the most stunning jewellery and wedding posies - when the pain is at its worst she gets out her beads, buttons etc., and gets going!
It has taken four years to get the cocktail of drugs right to manage the pain to an acceptable level for some of the time. Her pain consultant has been absolutely brilliant with this, but her GP an absolute nightmare and most obviously a disbeliever, as are so many people she has come in contact with or even 'best' friends. Don't give up, keep fighting this and check out what research is being done. Professor Peter McNaughton at King's College is doing some amazing work in research. There is hope so hang on in there and take whatever help offered to you.
Hello and thank you so very much for your reply to my post, I'm sorry your daughter suffered so much pain but glad to hear she has some sort of pain relief now. I too understand what it's like to loose what you thought were you're "best friends" along with some so called close family.... I now have a very small group of people I call my friends that haven't let me down & try their hardest to always be around for me. I like the idea of making jewellery & maybe that's something I should also look into trying my hand at, it's a good way to keep your mind busy which sometimes helps block the pain. Once again thank you for such a positive reply.
Absolutely try it...... I really truly believe it saved my daughter in her darkest hours at the beginning. She was a complete novice but is now selling her beautiful jewellery and wedding posies on Etsy! This morning she told me that when she is talking to me and making it she does forget the pain for a while. You can find everything on the internet to learn how to do it, Do try it! Good luck.
I too have lived with chronic neuropathic pain now for 42 years 22 years ago I had a neuro stimulator implant and this reduced my pain by about 50% I know I will never be pain free but over the years I have learned to live with constant pain I take a cocktail of medication and it has been trial and error I always wish for research to throw me another life line but until then I just hang in there I am so very sorry that your life has fallen apart in this way The loss of your partner will add to your distress but I am happy that your Daughter has moved back home to help care for you NEVER GIVE UP HOPE! There may be something around the corner until then just keep plugging away at the options available to you Others on here may be able to give you more support than I can but know that there are always people who care I CARE!
Hello & thank you for taking the time to reply to my post, please would you tell me more about the neuro stimulator implant you have, as I'm looking into deep brain stimulation to hopefully help with my neuro pain. I look forward to your reply.
Thanks for your reply and I will do what I can to give you advice based on my own experience Like a lot of us my pain is a one of and no easy answer My pain was caused by a very traumatic forceps delivery when my son was born in 1971 If I knew then what I know now I would have had no hesitation in sueing Money would not make any difference to my pain but I might be less angry that my injury was caused by sheer incompetence. I was a Midwife and out of loyalty to the Medical profession I did nothing about even though I was told to. I don't know if you know but there is a pain research unit in Liverpool My consultants over the years discussed my case with them recently there was a documentary series on TV from the Hospital unit and they were doing deep brain stimulation for various conditions All the cases were Neurosurgical I can't remember which channel it was on but it was amazing some of the results they achieved it might be better if your Lawyers could get you referred to see someone there. One of the Neurosurgeons who looked after me moved to Liverpool He was not involved in any of the surgery that was carried out there My neurostimulator was put in by a Neurosurgeon (who has since died) in Dundee When he initially put it in looked as if it was not going to work The following week he took me back to theatre and moved it by 1 mm and seemed to hit the spot he wanted to He told me he was trying to hit a spot the size of the top of a ballpoint pen. I am very grateful that this has been successful in reducing my pain to a level where I am for the most part pain tolerable I experienced all that you have in lack of sympathy People looked at me and this included my husband and family at times I remember having a septic thumb years ago and I got more sympathy when I had this than all the years I became very depressed and developed anorexia and I was in my 30's about 3 years after my medical accident They said it was like a death wish could not get away from the pain and this was another way. I eventually had Electric shock treatment 8 in total and this while extreme was the only thing that helped my depression This was years before I had my neuro stimulator Sadly my husband died 18 years ago at 56 so was widowed at 53 My life is far from ideal but I have a better quality of life and a level of contentment that I never knew would be possible I have 5 Grandchildren who are the love of my life I am telling you of my personal struggle in that I want you not to give up hope There is help out there I will try and find out when that series was on and have a look into whether you could get your lawyers or maybe your Dr to point you in the right direction from a personal point of view I don't honestly believe that Harley Street people are any better than others It might be worth trying to get a name that perhaps you could get a referral to see them in perhaps a private basis I will have a look on line and see what I can find out for you. In the meantime hang in there I had acupuncture and reflexology but it did very little for me but some alternative options help some people I do feel for you and please please never give up hope I know how near I came Are you seeing a Psychologist as this can help I think you are as I have read a lot and can't remember everything. Just DON'T YOU QUIT!
I have just looked on line and The programme is from the Liverpool Walton Centre for Neurosciences The series was on channel 5 and there were 4 programmes over 4 weeks I will have a look at their web site and maybe you could have a look too and see whether there is any way you could get a referral there to see someone. Hope this helps Sue
There is a Professor ER Eldridge who is a Neurosurgeon He is doing the type of surgery you are looking at Have a look at the Walton Centre Go to Neurosurgeons and you will see his name if you click on you will see the work he is doing. Hope this may be of help They have an enormous no of referrals from all over the UK
I have been referred to my pain specialist doctor by my neurophysiologist & he just happens to run a clinic 2 days a week in Harley Street, he works in a hospital in the city the rest of the time, he is very good & he has already sent referrals to Oxford & Liverpool hospitals regarding DBS as they are the only 2 hospitals with professors in this country that carry out this operation. Fingers crossed I will get a consultation soon at one of these hospitals and they will be able to help me. Until I hear back from them thank you very much for you ongoing support and help, I will look into the programmes you have mentioned. Many thanks.
Thanks for letting me know where you are at really pleased to know you have got that referral There has to be something or someout out there who can help you I was so impressed by this Consultant and by the ground breaking work they are doing Don't give up Hang in there Not easy I know but I believe in you I think that you are incredibly brave in dealing with this which has destroyed your life You can be helped and believe me when I say life can be better It can just take a long time to find the solution In the meantime ignore those who doubt you or who are unkind or uncaring what do they know? Nothing! Pain is invisible but the most soul destroying in what it does to the quality of your life It took me years to pick myself up and do the best I could to start living again There is HOPE !! Sue
Orr dora21.... I really feel for you!!believe me I knew what chronic
Pain is,,boy do l ,,its crap your partner walked out on you in time of need !!but he's better gone !!so much for sickness in health...after all them years !!sound like you have good kids!!!have you headed about young carers!!!??please contact they great!! Lately they donrun outta money has its funded by charity!!!! Your younger kid would have young carer would get like a care worker..they do trips etc..depending were live have centres.. Older child would be adult l..their great!!chronic pain is the worst has their in some cases 24;7.... You go though what..why me..same has my back!!!etc!!!I am so angry why didn't doctors MRI me in my 20???? Not 38!!!! They told me its bad..real bad.!on morpue for pain not great but??!hope you get a real big claim you deserve it..take your lively kidsfor big treatxxxxx bless you pPS your not alone I feel I've no one Jo friends etc since gave up work 5 month ago..not one has called asked how am....I could be looking at a fusion..I am falling to bits..,if wasn't for some on this site????some are fantastic..,please try young carers
Hello there, thank you very much for your heart felt reply. I have been informed about young carers & am planning on giving them a call to sort something out for my children. It's hard being in pain all the time, I'm so glad I found this forum, it makes me feel not so alone & although we are all here for the same reason "PAIN" I'm just glad I found you all. Thank you.
Dora21... They really are good!!!and give us mums advice too..my lass goes Xmas party's etc..fun days out!!they get there own surport worker too....chronic pain is the worst there 24'7.. Takes over your full life..can't be xxxx to get outta bed most days,,or cook tea..I knew,,xxxxwe will get their in end,,just need good stuff to happen to make it that bit better xxtake care
Dora21... I've numbers if need..my daughter has one she goes sees her at school..goes for coffee chat..trip s etc..talking groups.. To give them them time too!!!!really does help..talk about what's going on !!!I loux
Hello
Chronic pain can be very selective and its effects vary between patients with the same complain. In my case I have suffered serious chronic pain now for over twenty five years and now I do not expect any sympathy from not only family.but the general public. Pain can rip a family apart as many family members cannot understand what a sibling or child is suffering especially when the pain suffer reaches the age of adulthood. this can cause alienation and accusations of the suffer been lazy and this can become self fulfilling over time and if the patient sufferer eventually manages to get married the venom can spread from the sufferers side of the family and can restrict the dynamics of family life especially if children become involved, so the problems associated with pain can result in history repeating itself and the marriage can be sadly effected, with problems associated with disability.
When at work we can suffer side effects from strong medications our lives can be effected by symptoms of exhaustion and Reactive Depression from the exhaustion and lack of concentration, so again problems associated with our condition spread like the plague throughout an office environment or any other occupation we manage to twist our way into. This can lead to retirement on medical grounds or the sack. We then are at a point where the State begins to become involved and assessments are undertaken to work out what little we can do and are again questioned on how bad we really are.
We are always fighting the disability of chronic pain that many fit and healthy will and cannot understand and we end up shouting we are sufferers to a world who thinks we are all pulling Society by their healthy legs.
Now I suppose I am becoming more cynical and I understand this condition I have is real. I do not need to persuade or explain I am disabled and manage my medications as lean as possible to be able to function. Now I use the tricks of the trade that have been explained to me in Pain Management and the many courses over the years that the GP and NHS has offered me.
Life with pain is unpleasant, although it can be a real character builder for the wrong reasons. It is also a very lonely pathway that we learn too tread. If you understand the system you are forced to tread, treatments can be undertaken sometimes with risks many will appear that cause problems later on our life journey where we learn a great understanding of our life problems that is chronic pain
BOB
Hello
Chronic pain can be very selective and its effects vary between patients with the same complain. In my case I have suffered serious chronic pain now for over twenty five years and now I do not expect any sympathy from not only family.but the general public. Pain can rip a family apart as many family members cannot understand what a sibling or child is suffering especially when the pain suffer reaches the age of adulthood. this can cause alienation and accusations of the suffer been lazy and this can become self fulfilling over time and if the patient sufferer eventually manages to get married the venom can spread from the sufferers side of the family and can restrict the dynamics of family life especially if children become involved, so the problems associated with pain can result in history repeating itself and the marriage can be sadly effected, with problems associated with disability.
When at work we can suffer side effects from strong medications our lives can be effected by symptoms of exhaustion and Reactive Depression from the exhaustion and lack of concentration, so again problems associated with our condition spread like the plague throughout an office environment or any other occupation we manage to twist our way into. This can lead to retirement on medical grounds or the sack. We then are at a point where the State begins to become involved and assessments are undertaken to work out what little we can do and are again questioned on how bad we really are.
We are always fighting the disability of chronic pain that many fit and healthy will and cannot understand and we end up shouting we are sufferers to a world who thinks we are all pulling Society by their healthy legs.
Now I suppose I am becoming more cynical and I understand this condition I have is real. I do not need to persuade or explain I am disabled and manage my medications as lean as possible to be able to function. Now I use the tricks of the trade that have been explained to me in Pain Management and the many courses over the years that the GP and NHS has offered me.
Life with pain is unpleasant, although it can be a real character builder for the wrong reasons. It is also a very lonely pathway that we learn too tread. If you understand the system you are forced to tread, treatments can be undertaken sometimes with risks many will appear that cause problems later on our life journey where we learn a great understanding of our life problems that is chronic pain
Thank you for your no nonsense reply, you have made me think about quite a few things, I have never liked to except sympathy & still find it hard, just the other day I was finding it very hard to walk using my crutches due to pain when someone polity said I would be better off in a wheelchair, I replied polity back, "in by doing that I would then be giving in to the pain"
I'm trying to take it one day at a time but sometimes I look into my future & then panic about all the uncertainties that lay ahead, then I try to stop & focus again on the here & now. Today although my pain is quite bad my head is in a more positive place & that makes such a difference. Once again thank you Bob.
So sorry sweetheart, Have you tried Opana ER It saved my life. I still have pain but it's much more bearable. Hope this helps!!! Prayer's for you and your family!!! xxxx Mitzi
Well, I was having so much pain all over with fibromyalgia. I couldn't even lay my head down on a pillow. I don't have a lot of side effects which is a blessing. I take 10 mg 2 times a day. Hope this helps sweetheart!!!! xxxx Mitzi
Hi Dora ,you poor Darling.I have the same problems as you so I understand your pain. One of the best bit of advice I got from the pain clinic some 25 years ago was,Think of your pain as a mountain in your living room and find ways of getting round it.Try the liquid weed.wish they would give it to me!Have you tried to get some home help as well? I started hydrotherapy last week,I only get 4half hour sessions,but it was so nice.
I don't understand some men.Just when you needed him he leaves you too it.Very harsh.We are here for you:-)x
Hello, good advice, I'll try getting around that mountain in my living room! I am about to get some home help in the next few weeks, my legal team have secured an interim payment to help provide me with these sort of things. I had my 4 sessions of hydrotherapy at my hospital which finished a while ago & have been lucky enough to be able to afford a second hand hydro/hot tub which will be up and running hopefully this weekend! I found the 4 sessions I had helped relax me so much, that being able to use one as and when would be priceless. x
Hi, it's me again with part 2! You have not had the pain for very long and it does take a while to come to terms with it and accept it. There is something called the Spoon Theory (google it) which is a very good way to explain things to your family about your your life as well as make you think about how to plan each day. The book I mentioned is called, Living Well With Pain by Vidyamala Burch. I've not yet read it but my CBT lady recommended it. I was once talking to a nurse in chronic pain (who did not have an understanding nurse manager, I might add) and she asked me how I cope with pain as I've had it for 25 years. I told her that if I was mentally positive, I live my life and the pain follows. If I am feeling negative the pain rules and takes over my life. You can't always be positive, god knows I've tried but don't let your pain and your ex ruin your life any more. You are an amazing person for getting where you are. Finally (you'll be pleased to hear!) I have set up a Facebook page called Getting Chronic Pain on the Map. It's early days but I'm trying to get pain talked about in the media as you never see anything about it. I am also going to do a questionnaire into pain treatment and management by GP's and Specialist as it's shocking how many stories are on here about poor care and non understanding doctors. I may need your help with this if you are up to it. Finally get a hobby, I do cross stitch and play on a laptop, as well as watching This Morning and Loose Women! Stay strong xx
Hello again, thank you for replying again with the name of the book, I will look it up & look the other thing up on google too. I agree about being positive & then the pain follows, today is a positive day so although my pain is still with me, I'm keeping on top of it, not the other way round. I do just need to find a new hobby that doesn't involve too much movement! Thank you & hope to speak with you again soon x
Hi Dora21, you've had so many replies and I would guess by now that many people feel as you do. why do we keep going? We are existing not living? I go to that place many times, but I never take that final step, mainly because of my kids. They must love you very much to WANT to help you. I have a good friend with MS, she has two delightful daughters, but one will NOT help her. Why? Because, she says, her mother has always, always put her own needs before the needs of her daughters. She had MS when she decided to have children and so knew that she would have the responsibility of caring for them. But instead she thinks that they should care for her. Why did I tell you this? Our children have a very clear idea of right and wrong. You've obviously been a great mum and cared and loved and put them first every day for years. Now, they feel privileged that they can return the favour. What has happened to you is so desperately unfair. But, I reckon, from all my reading and talking to other people on forums, that it takes a good two years, with counselling, before you even begin to come to terms with the change that has been forced upon your life. Your feelings are completely reasonable and understandable and you have to go through them so that you can come out the other side. It is a period of mourning, which in your case has been made worse by your partner leaving. Don't be so tough on yourself. You have experienced a terrible, awful tragedy and it will take a long time to adjust. Meanwhile keep talking to us and we will help you through. You will get there, just take each day one foot shuffle at a time. Get through the next 15 minutes, then the next, then the next................and I will help you. I will hold your hand and wipe your tears, until you get there. Peace and love my sweetie xx
Thank you so very much, you have reduced me to tears with your lovey kind reply, it's so nice to know there are still such fantastic kind people here to help me. Thank you. xx
Dora21 may I ask for your personal email? I am in a very similar situation and my outlook on life seems to be identical to yours. It's such a comfort hearing someone describe my life, it shows there's more of us out there x I am 20 and have been dealing with chronic pain for 7 years now. I have taken all medication you have mentioned and wondered if perhaps you'd like a pen pal. I sure wouldn't mind getting to know you!! We can be grumps together xx And sod the selfish ones, they have no idea! Xxxxxx
Hi Dora21.As a fellow sufferer of chronic pain for most of my life,I feel for you!
I also have a 30 year old daughter who suffers from chronic pain and uses a wheelchair when she goes out. She is the mother of a 6 and 3 year old boys!
What you describe is horrendous!
Something struck me about your your post.
You mentioned the fact that you were hospitalised,post suicide attempt.
All you did was sleep for the whole week you were there.
One thing jumped out at me!!
You mentioned the fact that this was not the kind of help that you needed,yet you did not mention your pain during that week,only the fact that you slept for a week.
Where was the pain whilst you slept?
What I am asking is, what medication did they give you during this time.?.
Perhaps it would be a good idea to speak to your doctor, and perhaps try and include some or all of what they gave you in the hospital,in your daily cocktail of medication.
My pain never left me unfortunately, I was just so completely knackered that all I could manage was sleep, I think the fact that I felt I had left absolutely everything & everyone that had made me feel just so very low, even though there was lots of people much much worse than me & I was scared of some people in there, I, in someway felt safe, safe from myself, safe from what was still waiting back at home for me, not sure if that makes sense to anyone but while I was in there, I could switch everything inside my head off. My head was screaming when I got there, I felt like I felt when I first awoke from the accident, I had no interest in anything, I was very confused & couldn't even pick a picture book up as I had nothing left inside my head to concentrate on anything other than sleep, just like at the beginning, immense pain but so completely lost inside my very tired brain it just shut down on me. I was in for a week but to me it felt like a day, I couldn't believe I had lost a whole week. But it was what I needed, even if I felt it wasn't the right place to be. I got exactly what I needed a total shutdown, somewhere I didn't have to worry about anyone or anything else but me. it might sound selfish but I honestly felt nothing at all when I arrived there. I hope I have in someway helped you to understand. if anything they took most of my meds down so my pain was worse, but nothing mattered to me. Never want to feel that low again that's for sure x
Dora21 so sorry to hear your ordeal, you are in the right place, I know exactly how you feel, I have dark thoughts daily if I am honest.People do not get how the pain affects every single move you make, there us the guilt of nit being a proper parent for the kids like you said.My wife does so much for which I am extremely grateful.There is only so much she can take, the kids are the reason why I am still here, as I do nit want them to take the easy way out when faced with problems but I am going out of love mind as to his to cope with this pain, like yourself I was involved in RTA on the 18/11/2005 and the lady smashed into the back of my car, this left me with a torn disc and it took 3 yrs for the surgeon to find it.had an op in oct 2010 was ok for 18 months that is still with pain but relatively mobile. Now the pain is back and it is unrelenting and finally the surgeon has agreed to try ya new injection to hopefully see if that helps.only time will tell, I am hoping for the best but in all likelihood it might not make much difference. Re your insurance pls make sure the law firm you use work to get you the best compensation, check that you and the driver of the car that crashed into you are not under the same insurance company, they will do all they can to reduce the settlement they might even say that what happened during the accident to you would have happened due to age, make sure you fight all the way to the court.Stay positive i enjoy seeing love kids grow, money can't buy that.I am glad that they have you here for them, they will rather you are here with them than not.There are no easy answers except to say chase the surgeon to do all they can to help make your life bearable.
Dora21 so sorry to hear your ordeal, you are in the right place, I know exactly how you feel, I have dark thoughts daily if I am honest.People do not get how the pain affects every single move you make, there us the guilt of nit being a proper parent for the kids like you said.My wife does so much for which I am extremely grateful.There is only so much she can take, the kids are the reason why I am still here, as I do nit want them to take the easy way out when faced with problems but I am going out of love mind as to his to cope with this pain, like yourself I was involved in RTA on the 18/11/2005 and the lady smashed into the back of my car, this left me with a torn disc and it took 3 yrs for the surgeon to find it.had an op in oct 2010 was ok for 18 months that is still with pain but relatively mobile. Now the pain is back and it is unrelenting and finally the surgeon has agreed to try ya new injection to hopefully see if that helps.only time will tell, I am hoping for the best but in all likelihood it might not make much difference. Re your insurance pls make sure the law firm you use work to get you the best compensation, check that you and the driver of the car that crashed into you are not under the same insurance company, they will do all they can to reduce the settlement they might even say that what happened during the accident to you would have happened due to age, make sure you fight all the way to the court.Stay positive i enjoy seeing love kids grow, money can't buy that.I am glad that they have you here for them, they will rather you are here with them than not.There are no easy answers except to say chase the surgeon to do all they can to help make your life bearable.
The person who fell asleep & hit me was taken to court & charged with dangerous driving by the police as there was so much evidence to convict him, he also admitted it at the scene apparently... My insurance company is not the same as his and as I was unhappy with the supposed law company that was first dealing with my claim as I felt they were incompetent, I changed to a proper law firm that deals with serious traumatic brain injuries. I have seen a lot of improvement since I have been with this firm & I am pretty confident they are working with my best interests at heart. Some days I think oh I'll be fine & back to my old self again soon then I remember that, that just isn't on the cards for me... It's tough but, I'm strong today & I know although it is really hard painful work I will get there, I just wish I was this tough & strong every day then I wouldn't find all this so bloody hard to except x
Wondering how you are and if you are any further forward I do hope that you can get the referrals you need asap as I know just how difficult it is for you. Do keep us up to date with your progress AND remember never give up HOPE There could be help just around the corner for you Thinking of you ofter as your story really touched me
Thank you so much for still offering me support, I still haven't heard anything yet re the DBS, but I have now in place starting next week, 3 days a week for 3 hours a day a home help carer coming in, they are going to help with my housework & helping prepare meals & also taking me to hospital appointments & so on. This is a great start but, I am a little worried about some one I don't know coming in & maybe worried about once again admitting I need help, it's all so bloody hard, I know I need the help but when it's offered I feel hesitant, is this normal or just me?
You've now made contact with so many people, and although you can't see them, there will be waves of non-pitying sympathy and some prayers focused on you. You are not alone, despite feeling so isolated by the demon pain, from those you love.
Well done too for speaking out, and it does sound as though you need a good scream. You had obviously reached the lowest point when you took the pills (been there )but that in itself can be a turning point even though nothing else has really changed. You have survived, and you Are surviving! You Can do this because you do have people who love you, but they're not the ones you want to burden, I imagine. I have two suggestions for living rather than existing pain focussed, and please don't think I'm being trite, but they helped me see a way forward (eventually) which became the way upwards and onwards even with the pain. Firstly, you must talk, and you need someone who can cope with Everything you need to say, so a relative is no use. Please get a counsellor asap. Pain invades the emotions and reason, and fresh, resilient ears may help you sort out coping ideas that you would probably see for yourself if you weren't so trapped in your suffering. Don't worry about Drs, just a good listener that you can 'unload' with, especially the anger.
Secondly. Each time you go to bed (yes, with all the ... that entails) write up a few notes about your day, even if its only to record the bad stuff. Then write down one positive thing. It may be as simple as 'i put my own tights on' but it counts!
Lastly, write down one or two items that you would like to achieve the following day. For a friend of mine, it started with brushing her teeth! It took me a week to actually answer the phone! It may seem very simplistic, but pain has a way of holding you in each minute and hour of focussing on the hurt. This idea means you have to get up with a purpose which is forward looking, and it may help you start to see the pain as an enemy to be fought. It is hard to keep going, but you are obviously a stronger person than you think to have got this far. Bless you.
dear dora I to was involved in a R.T.A. and was hit by a car doing about 60 miles an hour and broke about 143 bones and was put in a wheeichair for life my pain is some times unbearable and I am on 250 fentanyl patch so yes I understand what you are going through and unfourtunately there is no cure that I am aware of but if you have not tried the fentanyl patch I recommend it as it actualy works and would at least give you some relief from the pain hope this helps love and hugs xxxxx
I'm so sorry to hear that you have been through such a terrible ordeal but, thank you for spending the time to share your story with me. I have unfortunately tried fentanyl patches, I got up to 150mg but was told by my pain doctor that as I was on so many other meds for my pain it was unsafe for me to be on such a high dose of fentanyl & as they weren't making much difference to the amount of relief, I was most probably doing more long term damage than good.... So I had to be weened off of them, I'm now on a concoction of drugs & as of yet they still are not working for me. To make matters worse I have now some 15 months on from the accident started to have seizures as well. It never rains but it pours..... I'm hoping to have a consultation soon with the possibility to have what's called deep brain stimulation, that is if the doctors consider it to be suitable for my condition. Fingers crossed I am suitable & this procedure will give me the much needed pain relief I so desperately need.
Once again thank you and I'm glad fentanyl seems to work for you and give you some real relief from your pain. xxx
HI! You have been through so much and are very brave. Pain is a horrible thing to live with and only those who are going through it can truly understand it. I wish I had a solution but the body is so complex! I also suffer immensely with pain and it's so hard. I wish I could help you, but stay strong and i'm glad you have had lots of replies to show you, you are not alone. One day at a time is all you can do and maybe try and do something nice if you can
Hi Dora, I can totally understand where ur coming from. I suffered a bad horse riding accident, that caused me to twist my pelvis and damage cpl vertebra and coccyx. I was so fed up with the constant chronic pain and complaining about it I was annoying myself. I then injured both my feet and had two foot ops which have resulted in me having crps. I was on enough pain meds to put an elephant out and yet still nothing would even touch the pain, and thought why am I taking all this for nothin. I was even on more meds as to stop the side effects that we're causing my ibs to kick off badly. I was fed up of going to my dr and feeling like I was wasting their time.
I realised that the more stressed out I was making myself and allowing negative thoughts to rule my day the worst I felt. After reading up on crps I realised that nothin will take the pain away and I just needed to learn to cope the best way I could. I missed being able to ride and being outdoors so bought myself two puppies and slowly built up myself up to walking everyday. Over the last 12 months I'm able to go for hr or twos walk once maybe twice a day . The distraction is helping, I do get good days and ALOT of bad days and I've managed to come off most my meds which has helped in keeping my mind more positive and if my pain gets bad, I use a tens machine which helps to stop me cramping up and going in to spasms. And when I get really low I remind myself that I've got myself this far and to not give up.
I really hope things will start to look more positive for you, sometimes you have to hit rock bottom for your own self to realise that your stronger than anything else to get you through the pain.
I was so sorry to hear of your pain, I too was involved in a RTA in 1993 and damaged my hip hence 21 years later still in pain and on this forum, although I have never attempted I can totally appreciate why you took an overdose , having this pain is so depressing and I must admit have thought about doing it but only just to get rid of the pain, have only ever admitted that to my hubby! I would never do it but just cant believe what pain does to you,.
I am on fentanyl patches and they are really helping and some days are better than others but keep going you can beat this, I dont have any magic solutions apart from pace yourself, get lots of rest try and eat healthy and keep fighting, you can beat it , most of all have a big hug from me xx
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