Chronic pain syndrome: Hi, I have suffered with... - Pain Concern

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Chronic pain syndrome

Kimlc profile image
30 Replies

Hi,

I have suffered with chronic spinal pain since I had an accident in 2009. A year after the initial accident I found myself unable to move. After a MRI it was discovered I had annular tears in 2 of my discs and this was stated as having a soft tissue injury. By 2011 I was unable to return to work.

I am on strong pain medications and have been for years, slow release and beak through pain meds. I do see a physio and walk around the block everyday. So times I drive and have semi ok days - but always with the help of medications and pain is never switched off just down a little at short intervals. I have to rest often and am bed ridden if I do too much, ie - any house work or too much movement.

My question is does anyone know a person who has suffered from chronic pain syndrome in the lower spine particularly that has overcome this?

I have seen surgeons that tell me fusing my spine will not solve my pain problem. It is the constant burning and crushing feeling I can't escape from. There are many days where I feel unable to go on as the pain runs and ruins my life.

I'm 50 and feel 90. I miss doing daily activities and being with family as I constantly need rest.

I'd love to get some hope by hearing back from anyone that has heard of someone, is someone, that has overcome chronic pain syndrome.

Thanks for reading my long winded whinge.

Kim :)

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Kimlc
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30 Replies
irish-coleen profile image
irish-coleen

Hi Kim sorry i cant help. i hope someone can that comes along. i would be interested to see as i could have written your post myself. mine is going on 7 years and im 44 now. my annular tears are thoratic and lumbar along with fibro now so u can sympathise fully with you.

mags

Kimlc profile image
Kimlc in reply to irish-coleen

Hi Mags,

Thanks so much for your reply. I'm sorry that you could write the same post yourself. 44 and 50 are so young to be experiencing such disability.

I hope you can find relief too. Mine is in my L4L5S1 - I have a little stenosis in thoracic so I can imagine the awful time you have.

7 years is a long time to have chronic pain! I hope we both can one day find total relief!

I imagine you are on a lot of medication too to manage?

Thoughts are with you and thanks again for reading and replying to my post.

Warmest Regards

Kim

irish-coleen profile image
irish-coleen in reply to Kimlc

Hi Kim. yes mine is those levels at lumbar also T9/10 11/12 with stenosis so i know exactly what your going through. im on brutrans patches along with 24 other tabs daily for nerve pain. muscle spasms and inflammation. ive paid hundreds of £ on private phsyio etc. also 12 spinal injections. Are you on lots of meds kim?

big hugs xx

Kimlc profile image
Kimlc in reply to irish-coleen

Hi Mags,

Yes I am on lots of medication - slow release and breakthrough ones. I tried the patches but was unsuccessful. You are on so much too darling. I feel so much empathy for you. I really appreciate your messages! It helps me so much. I hope you're doing ok today.

I have my granddaughter with me tonight and I notice how moody I get from the meds and pain :(

She's such a sweetheart but it's a tough gig!

Big hugs too

Kim xxx

irish-coleen profile image
irish-coleen in reply to Kimlc

Hi Kim your very welcome. i know it really helps to speak to people who understand what you are going through. im sorry you have had to give up work also. im just in the process of giving up work. i just couldnt continue any longer. its very hard to accept. Im glad you have your grandaughter and family but i know how tough it can be..when my 3 year old grandson comes i love so much to see him but do pay with more pain from just interacting with him.im just finished a chronic pain programme and it was so good to get support from others who understand. you can private mail me any time you need to vent..hope you have a good day. well as good as it can be..xxx

mags x

Kimlc profile image
Kimlc in reply to irish-coleen

Thanks Mags,

Wow so many similarities!

I found giving up work very tough as I lost so much of my identity and friendships as it was too hard to maintain those relationships when I was experiencing so much pain so I couldn't keep up.

Yes it's great to have my family but I feel like I've even abandoned them to a point as I just can't keep up or have the energy either.

Good luck with everything Mags - I'll be thinking of you stopping work. The good thing is having time I suppose to rest our aches and give ourselves that care we need.

I'll take you up on the email conversation.

Thanks again

Kim xx

irish-coleen profile image
irish-coleen in reply to Kimlc

Hi Kim. yes so many similarities. im sorry the patches did not work out for you but i think theyre comes a time when they stop working also. i definatley dont get the same relief as when i started them.i seem to build up a tolerance very quickly to meds. I know kim its very hard to accept giving up work. i like you cannot maintain my friendships with my friends and colleagues due to pain and fatigue but i really miss them and work as i had been there for 18 years. Its a very complicated process trying to get retired on ill health..i hope you are managing as well as you can today and that pain is not so severe xxx

Kimlc profile image
Kimlc in reply to irish-coleen

Hi Mags,

We're like two peas in one pod!!!

Yeah my tolerance now is awfully high for medication! I'm using ice packs more these days to try and minimise the amount of breakthrough meds I take.

18 years is a long time! I know how tough it is to maintain connections :( Feel like I have made some new friends like you on this site and that makes me happy. I'm using my mobile phone so I haven't explored the site or anyone's profile yet - but that's something to look forward to.

I got a letter from work telling me I'd reached my 52 weeks of workcover so was sacked by a letter and I'd spent 11 great years there! Very disheartening.

I get mighty depressed some days and am not sure how long my body can sustain all the pain and meds. And yet I'm grateful that I live in a place where I can access health services.

Just about to have another rest.

Hope you're feeling as well as possible today Mags. My thoughts are with you. Big hugs

Kim xxx

Calceolaria profile image
Calceolaria

Would Pain Clinic be an option for you?

Kimlc profile image
Kimlc in reply to Calceolaria

Hi Calceolaria,

Yes I've done 2 pain management courses and 2 steroid injections. To manage attending the groups I had to increase the medication so it was a bit of a double edge sword!

I try and stay active and have learnt about pacing. But I'm still in chronic pain.

Hope you are ok

Thanks for your time

Cheers

Kim

Boozybird profile image
Boozybird

Hi Kim,

Chronic pain usually hangs around but there are things that you can do to lessen the pain and it sounds like you might need to start with improving mobility. Easier said than done! If you've been like this for years chances are you are as stiff as a bored which will make everything hurt. Imagine breaking your arm, having it in plaster and then trying to get it going again after 6 weeks! Stiff and painful. Those tears in the discs will be probably leaking crap onto nearby nerves keeping everything annoyed so it's hards to move the spine to restore flexibility without annoying the tears but you must try. A good physio should be able to help start you off by mobilising the surrounding segments for you and showing you some simple, small movements that you can build on to get moving and finally regain motion and strength. Its a long uneven road with hijackers all along the way but as they say, each journey starts with a single step.

Best wishes

:) x

Kimlc profile image
Kimlc in reply to Boozybird

Hi Boozybird,

Love the name. I drink on top of medication as this helps pain levels so your name rings some truth for me :)

Thanks for your response. Yes I do keep as active as possible and see a physio twice a week and exercise as much as I can. I agree the more I move the better I feel but I must add the more pain I have as well so I really struggle with the outcome of activity. I'm a little out of action with hydro as I have recurring hernias so the pool aggravates them too!

I thank you for your reply and time to read my post.

Kim x

Boozybird profile image
Boozybird in reply to Kimlc

Hi Kim,

Yes, wine has been a lifeline! :)

I don't mean rushing around doing lots of exercise because with annular tears exercise can make things worse and even 'lock' in pain. All this core stability crap especially can make things worse as working the core compresses the spinal segments further. Some physios are too gung ho as well. I just mean really gentle movement and awareness stuff trying to figure out where the blocked segments are and avoiding the dodgy bits. Keeping hips especially limber to relieve the back. for example, after walking lying on a carpet and very gently rocking your knees to chest for a while to ease out the back. Progressive relaxation not for airy fairy reasons but to work out where you are holding excess tension. Usually shoulders, tummy and clenching the buttocks all of which cause back pain. ;) xx

Kimlc profile image
Kimlc in reply to Boozybird

Thanks Boozybird you're a sweetheart! Yes I agree. About wine and exercise :)

My physio has gone a bit hard on my spine and I'm aching like hell this morning.

I appreciate your great advice and will modify my regime.

I've taken so much medication just to get a few hours sleep that I can bearly keep my eyes open but can't lay in bed any longer.

You're a gem!

Hope you're having an ok time of it

Sending lots of healthy vibes your way and many thanks for talking with me, that seems to be the best medicine!

Kim xxx

Listen because this is important.. you really need to get a good pain specialist. They will work hard with you to get you the things that you need to make your life easier and they will get you some help and hope to start feeling better. They won't allow for you to live so miserable and alone. They also can work with your doctors to get you on adequate pain medicines since doctors tend to under-treat pain by far. Your condition sends shivers up my spine in thinking how much a tear would hurt.. it wouldn't surprise me if you have some swelling going on there in the spine as well... hugs, hugs, hugs, hugs.. and please please seek out a pain specialist. I can't say it enough how helpful mine is. x

Boozybird profile image
Boozybird in reply to

Gaud! If you know a good one then share!!! :)

Kimlc profile image
Kimlc in reply to

Hi Yikes2,

Thanks for your reply and reading my post. It means a lot to me!

I agree and have a wonderful pain specialist and GP both are so supportive and help me so much.

I'm on lots of good pain relief but am alergic to quite a lot too so am at times limited with what I can take.

I will take on your advice and think you're right about the swelling. You are a really lovely person for sending me such a caring response.

Many thanks again and hope you are travelling well with as little pain as possible!

Kim xx

I live in the USA.

janiegirl profile image
janiegirl

I'm so sorry to hear of the pain you are having! It always seems so unfair, right?

I too had a bad a ar accident in 1991 and I'm afraid the pain is still with me! They also discussed fusing the nerves, but I couldn't take the tests that the insurance insisted on beforehand, so I've kind of given up on that idea! They did say that if I did it, it won't last very long, so why bother going through all that extra pain for a "bandage"!

Dealing with pain and suffering is never easy, but in some ways we become stronger within ourselves (for me it was my faith that became strong again)! Through mediatation and positive enforcement within, I've become better at dealing with the daily pain. Yes, it is hard and at times I cry asking God to take the pain away! I too am 63 and feel like 90! My mother and grandmother lived into their 90's and 100's, so I think I will be dealing with those for a long time!

It's funny, my hair has started turning black where I had a lot of gray! I wonder if it is from meditating because that is when it started!

Good luck to you and don't give up on your tolerance!

Jane

Kimlc profile image
Kimlc in reply to janiegirl

Hi Jane,

Thanks so much, reading your post really helps. As I think meditation has made a vast improvement to my mental health - I love the reversal of the grey hair as this is something I'd l

Kimlc profile image
Kimlc in reply to janiegirl

Sorry Janiegirl something went weird with my phone and I couldn't edit my last post!

Thanks for your story and reading mine! As I was saying would love my greys to fade away! I love meditation - it soothes my soul.

I'm sorry that you've lived with so much pain too yet you are an inspiration to me with your ability to cope and live on well and at peace to a degree with acceptance. I struggled so much with accepting my initial accident and prognosis.

Reaching out and receiving all of these wonderful response has been so wonderful - I am grateful beyond words to you and everyone here.

Thanks again Jane - I hope you are having a pain free day if that can be possible! Hugs

Kim

janiegirl profile image
janiegirl in reply to Kimlc

Hi Kim,

Nice to hear from you and that you also enjoy meditation! We all need to join in and help one another because we are all in this thing together on this planet! I watch Super Soul Sunday on OWN if you get that station. It is such a pleasant way to listen to others and how they deal with life , their souls and their well being!

Peace be to you and all who read these words!

I hope the pains and frustrations can be few and to always be thankful for what you have (or don't have)!

Jane

Iona467 profile image
Iona467

Hi Kim

I also suffer with a lot of pain. I had a serious car accident in 1999 and then another in 2009. I had an autoimmune problem for 20 years which was finally assessed as Lupus also Fibromyalgia, this impacted on my badly damaged back and having 3 prolapsed discs and one disintegrating. In the 1999 car accident fluid leaked in my back resulting in a large swollen patch at the base of my spine.

I am having cortisone injections next week, it has taken so much time for some help. I now sleep for 2/3 hours each night as I am in so much pain and having strong nerve pains 24/7 mostly in arms and legs. My lower back and neck are so painful and I am never without this pain. It is worse when I lie down, particularly when I try to move then. I am taking Lyrica for the nerve pain, they are not working but today my GP said to increase the dose. I'm skeptical.

I lost my job in April 2014 and now I am house bound. If I vacuum, after 5 minutes I feel like screaming as my back is so painful, pain in my legs also but the main pain is my back which feels like someone strong is crushing me.

I have problems walking as this seems to put pressure on my back and I get sharp pains in my back and legs.

I am taking pain killers all the time which is not good. If anything helps I'll let you know!

Kimlc profile image
Kimlc in reply to Iona467

Thanks Iona467 for reading and replying to my post. Sounds like you've been through hell you poor darling. I understand the constant pain - it's awful and relentless - and I'm sad to hear you experience more than your fair share.

Thanks for letting me know how you cope too and I think it's important to hear everyone's story to help relieve some of our isolation and aloneness with pain. Be great to stay in touch!

I'm alergic to lyrica but had the cortisone injection and it helped my leg pain so I recommend it. Good luck and hope all goes well

Warmest regards

Kim

Iona467 profile image
Iona467 in reply to Kimlc

Thanks Kim, you are so kind. xx

Curlygirl54 profile image
Curlygirl54

Good morning Kim and all you poor souls who have responded in similar vein,

My profile has got the detail but in a nutshell I had a road accident when I was 18 and another in 2009 ( bad year huh Kim

Kimlc profile image
Kimlc in reply to Curlygirl54

Hi curlygirl54,

Thanks for kind thoughts. I'm so sorry to hear you've had two car accidents and suffer pain still - that's truly awful and I can't imagine how traumatic it would've been then to continually have a pained body :(

Yes 2009 was a shitty year!

I've found such kindness and strength from you divine inspiring people and I am honestly so grateful that you and everyone has taken the time to read my post and write to me. This is the most helpful medicine. I honestly didn't think I'd get a reply so am truly rapt.

I will take the time when my granddaughter goes home tomorrow to read your profile. I struggle having her stay but love her being with me of course. I'm always flatlined a few days after too with pain flare ups :(

Thanks for your response btw. I hope you're doing ok today and are having pain relief. Take care

Hugs

Kim

LupusMomma profile image
LupusMomma

Hi Kimlc, 𝚈𝚘𝚞𝚛 pain sounds very similar to mine. Except I had the fusion done. Then after surgery, the pain was "post surgical pain" then I Had about a year without pain in my back or my leg, then the back pain returned. This time it was from scar tissues. I'll jump ahead a couple of years doing steroid injections, more pain med because what I had was no longer helping. Finally my dr suggested a NEVRO implant!!!!! I did the trial, I got the implant and it has Totally taken away my lower back, leg and hip pain!!!!!!! I still have a lot of muscle pain and joint pain due to Lupus and fibromyalgia, but my hips lower back and legs are like new!

Macblank profile image
Macblank

The secret is finding your daily base pain and how well you can cope with that. I can't do the normal activities... Washing up, laundry, Hoovering, washing,⬅️⬅️⬅️if I attempt any of these, I have to accept I'll be on the morphine for the rest of the day.

Also, learn to NOT MAKE USE OF A GOOD DAY! When you do, YOU pay for it, so learn to pace yourself... Basically baby steps every day for the rest of time!

Now obvs, I HAVE to wash, but I've learned to wash the essential bits only... Arm pits n bits n underneath!... Luckily my.fiancee is very understanding and is sort of.my carer. So a couple times a week, she'll shower me and dry after.

Pacing n baby steps n learning where your ok level is.

The ok level, isn't pain free. It's like toothache: if you don't upset the tooth you can cope with the humming pain, until you drink too hot/cold or bite on it, causing it to.flare up.

I've had chronic back pain since the 80s and every so.often, it'll flare up and leave me worse than I was before. My last major spasm was 2009 when I was in bed for 5 weeks and then house bound for further 4 weeks. Best thing to happen then was the ex kicked me out right in the middle.of that... Hahaha loverly woman!...

You will learn it can take a while, but pacing is very key.

Blue46 profile image
Blue46

Hi kim I too suffer from the constant burning in my lower back after back surgery it is driving me mad . Do you have any tips

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