Pain pain pain

[Fedupwithmybackpain]

I just feel so mixed up not sure whether I am coming or going.The medication is not helping either and my family life is in meltdown,anyone feel like this ?

[casper34]

Hi

In a nutshell yes, I got to the point where you are some years ago, for me sadly it was to late to save my family, marriage life by the time I received proper help and pain relief, It was so hard on my family, to get to grips with my

M/S nerve pain that never went and stopped us basically functioning as a family unit, I would always be the one who "stopped us doing things as a family because of pain"

I would strongly press your GP to refer you to a pain clinic as my doc was always very reluctant to up my meds, where as soon as I sat down with the specialist he doubled my meds and I at least stopped the thoughts of , I don't want a life of pain any more full stop and will end it if someone doesn't help, I was not suicidal just wanted to end the pain, i do hope you get some relief and save your family life but you must push them and keep pushing because GP's are reluctant to refer, all to do with costs, all may I also suggest you play the game i.e. do the excercise and stuff they ask because they see it as we won't help if you don't help yourself even if you know it's useless, sit with your wife and have the heart to heart, explain you know it hard on the family and with their support and help compromise can be reached good luck and I hope you can pull through

[Fedupwithmybackpain in reply to casper34]

Thanks Pete4568, really appreciate the advise, waiting on counselling from the GP, he says after counselling he will organise pain management.

I have persevered with the Tephine, Help a a little, will go back to the doc after my surgeon visit tommorow.

[Lottieonline]

HimPete,

I understand where you are coming from. I suffer from colitis and fibromyalgia plus depression, anxiety and OCD.

My husband within the last few weeks told me he is unhappy, finding it very hard to cope and has no romantic feelings towards me. Who can blame him?

I'm extremely gutted.

I have been to GP whose been brilliant and sent me straight away to see psch consultant and he has immediately changed my medication

I'm waiting for my gall bladder to be removed as day case, I hope! New hearing aid next month. So lots going on.

How does one try to keep the marriage going when I'm in excruciating pain all day long. I still manage to work 4.5 hrs 3 mornings a week but this is becoming very difficult nowadays

Advice greatly appreciated.

L

[Fedupwithmybackpain in reply to Lottieonline]

Lottieonline, thanks that is rather a lot for one person to handle.i recognise a lot of what you have said in my life, waiting on the referral for counselling and also a meeting with the surgeon.

[Suedub]

Hiya, I feel you I've got the same going on at the minute, my hubby can't accept that I'm never getting better and its all about pain management. The kids are struggling with that mammy can't do things with them although the do get to see release which is a charity for young carers and it really helps them. But as far as my relationship with my hubby its kinda a non-existent at the minute and I'm barely able to deal with myself and the kids emotional that I've go no room left for the hubby. They all except me to be able to still do everything I always have cooking , cleaning ect. I hope you get to sort yours out its hard especially when you feel like carp. Big hugs x

[Fedupwithmybackpain in reply to Suedub]

Suedub,

Thanks , I keep fighting to keep the family together despite this pain,and how it drains me.We do talk but it is really tough as I try to see it from both sides.I am determined to get the surgeon to be straight with me as to what can be done, also waiting on counselling from GP.i am trying to take things a day at a time.I try to be optimistic and trying to live love life as best as I can.

Hugs x

[Hidden]

I've been lucky. My family are supportive. My children were only 6 & 8 when my pains started 12 years ago. They can't really remember me without pain.

What helped me was to work out what I could do, and focus on that. I never said I couldn't do anything, I just suggested X or y might want to do that too, lets ask them.

I delegated out things I couldn't do to family and friends. My Dad was delighted to teach them to ride bikes. I did a lot of old fashioned things like baking, arts and crafts, gardening, and we had a breakfast reading club. My husband left for work at 6 am, so me and the girls would snuggle in together and read our books until it was time for us to get up. This helped my younger daughter who had difficulties with reading. I also did a bit of French and German with them.

I always found a way to take part in out door activities. At go ape I became the photographer for my family. By the end I was taking photos for everyone in our group, by walking the route underneath.

In the early days, I rewarded myself after each thing I did. I broke tasks down into smaller units. So I had small treats for all the stages and then a bigger one when finished. It could be reading a mag, watching a dvd, listening to a cd, a piece of cake. In fact anything that made me happy. That way my day became full of happy things which became my focus, not the pain caused by doing things.

We had "happy helpers" when everyone did a bit of housework. 4 people doing the work means only an hour of housework every few days. We put some music on, and had hot choc and donuts after, made it a party.

The girls did stretching exercises with me and came with me when I went to my alternative therapies. I thought that if they had any questions, then they would get the right answers. But I think they just wanted to play with the toys. The craniotherapist let them take his dog for a walk in the field next to his house/studio. They grew up quicker and had more responsibility earlier, but they are still very supportive and helpful. They understand better now as they know what happened to me, but the early days was as much fun and games as I could create for them. Tidying up was "who can find something yellow to put away?"

Watch a baby learning to walk. It doesn't give up because it keeps falling over. We all had that determination once. Just need to rechannel it to your life now.

Life is what you make it. You can choose happiness or not. It's just harder work with pain.

Family go through the grieving process for the person you once were, there's denial, anger, another one, acceptance. Maybe your family would consider counselling? and all of them go through it at different rates. It's a normal process but very unhelpful to you because they are not "there" when you really need them.

I found focusing on what I could do (being positive) helped them understand better. It showed I wasn't useless and was still an active part of the family unit. My pain has brought us closer together and we work as a team in everything.

[Fedupwithmybackpain in reply to Hidden]

Zanna,

Wow already feeling good in my mind by reading how you handle this and I am learning a lot from your approach,thanks.Coincidentally my friend came to pick me up to watch football at his, my daughter came along as he has a little girl also.

That was very helpful as It got me out of the house,and that gave my wife a break from me around the house all the time. Amazing how a small thing can change the whole outlook.trying to organise more things like this so I do not feel trapped at home.

I have my assessment with Atos next month wish me luck, I need to get the motability car back as being trapped at home due to my mobility really does get me down,my friend picking me up and dropping me back home lifted my spirits.

My two are teenagers,so they have a fair amount of independence though this accident happened when they were 9 and 4, affected them and continues to, though we talk about it.We have had counselling probably due another session as a family.

I have not been able to go back to work due to extreme pain and worsened mobility, I am gradually accepting that pain will be with me as long as I live and that doing things when the pain allows is probably the most I can hope to get out of life.

Radically looking at myself as a pensioner well before my time is the most likely option open to me.So I am looking at my financial options in a new realistic light.

By doing so means I can work on the things that I can and accept that I will have to do other things as and when the pain allows.I am working on my mindset, ie. using wheelchair when going out as I cannot walk far due to pain,using a wheelchair is hard for me to get my head around but if it means I am able to participate in family activities then that is what I must do.

I am trying to accept small steps as the best way to live my life, hard but like you said it is the best way forward.

[Hidden in reply to Fedupwithmybackpain]

Don't get me wrong. I have my down days when I wish I could be spontaneous and do something different. They are less and less now. Occasionally I will do something but I know the price I will pay in recovery time, so I weigh it up - is a walk on the beach worth 5 days recovery? can I afford to have 5 days recovery?

I did find it very hard in the beginning to keep being positive when there was very little sign of progress.

But for me not doing anything was not an option. And the building things up from 5 - 10 mins was extremely tedious. But you can stop where your body is comfortable. I can get where I need to locally with a half hour drive so I've never increased it. We are at last getting a train service so I'll be able to travel further afield. Buses unfortunately are too uncomfortable.

It's habit now to break things down into small tasks and rotate the

Although I don't treat myself as often as I did.

Change can be positive and there are so many things to explore and experience, pain is a good excuse to try them out. And if you can't spoil yourself when you've got pain, when can you?

Living with pain or existing with pain is a fine line and 12 years on I'm still working at it.

Someone once suggested I talk through a task before doing it and acknowledge when the pain would kick in. Like "I have to empty the washing machine. I need to get on the floor to protect my back. Then I have to stand up using the counter as support- this is going to cause some pain. Then I will rest". The theory is by giving your body permission to make pain then its not as bad a pain because it becomes your normal default and the brain turns it down.

There's a video (I'll try and find it and post up the link) of an American war veteran who is left unable to walk. The situation and the fact no-one wanted to help him got him down. He couldn't afford treatment as he was on benefits. He eventually finds a yoga teacher to help him. Quite a while later he got himself walking and running. It's extremely inspirational and his determination shines through.

[louiseamos in reply to Hidden]

Hi fedupwithmyback..tell me about it..doctors won't believe me..physio said I've a.s.I've arthritis in lower spine..physio sent me gp.. said need upper MRI.correct meds etc..was told emm gonna die on them morpie..so cut down that day..Friday..I've been in bed all weekend..can't believe my other half still with me..don't wanna go out ta house etc..my own doc rang me today.felt like waste of time....it would help if we got right care..not meds to hide pain..I've 3 kids boys austic.. trip has mental health props with food at mom.. stresst right out..I've joint pain in every bloody joint..neck killing me...I knew how you feel.....x

[mitziblue]

Yes often. Then I stop and look at others who are sadly to say in worse shape. If you haven't seen a pain specialist please do!!! It makes a lot of difference. Best of luck sweetheart!!!

[Fedupwithmybackpain in reply to mitziblue]

Mitziblue, good advise, despite it all I have a lot to be greatful for, by just getting a lift from my friend to his and watching football, lifted my spirits and distracted me from my constant pain.

[mitziblue in reply to Fedupwithmybackpain]

I'm so glad. I have had a rough time of it myself. When I was small I was sexually abused. Then I was raped at the age of 20 and thought I wouldn't live to tell anyone. Next came the miscarriage due to a kidney stone. I contracted endo. due to the doctors not doing a D&C and ended up with chronic pain for years before at 30 having a total hysterectomy. Then came the ruptured disks in my back and then the fibro along with other things. The saddest part is I've lost all of my family except one uncle and my daughter, but she's 600 miles away and could care less about me. Ever since my divorce she doesn't want much to do with me or her dad unless it's money. He was cheating and I never had a clue due to being so sick. They were my whole life, along with my mom but she passed 7 years ago. I feel like at least here I can contribute to someone out there. I pray you find the help you need. It's hard in a world where people are so wrapped up in themselves. Best of luck!!!

[Fedupwithmybackpain in reply to mitziblue]

Mitziblue so sad to hear all you have been through, just the fact that you offer help, I am so grateful and admire your courage, this pushes me to make the most of what my life is now.Thanks and best of luck to you also.have a blessed week.

[mitziblue in reply to Fedupwithmybackpain]

Thank you sweetheart, it means a lot!!!

[red_skye]

Hi there, so sorry to hear how things are going. I have suffered from relentless back pain for 5 years now, due to a hereditary condition, and I went through a phase like that. Sometimes you just cant think straight when there's no escape from the pain. We were in a pretty stressful situation - just moved to house full of stairs needing lots of work, husband just started very stressful new job, me caring for our disabled child who needed a lot of lifting/carrying, so it really put strain on my condition. Some things that really helped me: reminding ourselves we're on the same team, and writing a list of who was responsible for what, so my husband could concentrate on the things that give me the most trouble, and we both knew what was expected of us. I found a lovely supportive GP, who upped pain meds to max dose of tramadol. I found it really hard to justify to myself spending money on me, but it helped dramatically when I started seeing a sports/remedial massage therapist. He cant get rid of the underlying cause of the pain, but prevents a lot of additional pain and keeps it manageable by keeping everything loose, helping me with my posture etc. I found a DVD called Fit for Life 10 min Workouts for Back Pain. It strengthens the back, and the stretches really help ease the pain for me. So did buying a good quality, thick memory foam mattress topper (we have to take it everywhere we go to stay!!). When you are having a better moment, sit down and write yourself a plan of all the things that help, (for me, hot bath, getting out the house, doing stretches, tens machine etc) so that when its really bad and you cant think straight you have something to turn to, and so does your partner. Taking a deep breath, sitting down and talking through ways to get through this together can really help. My husband was frustrated at feeling so helpless, but now we have a good life and relationship in spite of the pain. I concentrate on the things I can do, and I couldn't manage without him, but he says the same of me. My Mum, who has the same condition, once advised me to accept the pain. Whenever I start to feel like its all getting too much I remember that and it helps stop the panicky feelings of being trapped by it. I really hope you get on top of this, thinking of you.

[Fedupwithmybackpain]

Thanks Red_skye,

Good to know there is hope despite all the doom that seems to be all around.

I have got the foam mattress definitely worth it.I try exercises only when the pain allows, seeing the surgeon tomorrow.will try and stay positive, currently on Tephine, helps a little.

Thanks

[red_skye in reply to Fedupwithmybackpain]

All praise memory foam - i cant believe i ever managed without mine!! I'm the same, often too sore/stiff to do exercises, i just find very gentle stretches can help take the unbearable edge off, although when the pain is that bad its always the last thing i feel like doing, hence the "plan for really bad days." There's always hope, don't give up. A couple yrs ago I never thought Id be doing better with it, but i am. Very best of luck with the surgeon. Hope you get some positive news & better pain relief..

xx

[Hidden]

That video is on you tube and is called arthurs transformation (extended cut) never give up.

I saw it a couple of years ago and it still haunts me (in a good way)

[sarahjd]

Yes!! Totally feel for you, sometimes I feel at my wits end, what medication are you on?

[Fedupwithmybackpain]

Thanks Sarahjd,

I am currently taking Tephine