Pain Concern
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Degenerative L5/S1

Hi everyone,

I have been diagnosed with (I think it's called), Lumbar l5s1. I suffer with sciatica all down my left side, I have had an MRIscan which confirmed this and I also have osteo-arthritis, both degenerative to the lumbar 5 & Sacrum 1 which I am told is never going to get better, I am on 30mg doses of morphine (tablet form - 1 in the morning & 1 at night) plus oramorph 4 times per day, 5ml doses, I have amitriptyline every night, for which I take 3 25mg tablets. Even with all this pain relief I still suffer, does anyone have any ideas on help to ease the pain, I now walk with a limp as my right leg is over compensating for my left, the pain is unbeareable some days, how do you guys cope?

Thanks everyone :-/

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Hi , im sorry to hear your condition.i am in a similar position myelf only i cant take any painkillers due to liver disease. I was diagnosed with osteopenia in my hip last june. My pain continued to get worse .i had an mri in dec last yr .the results came back last week .i now have the onset of osteoarthritis, abnormal bone growth of the acetabulum? .two prolapsed discs middle to lower back with obe T9_T10 pressing on the nerve. I also have oedema and something about the thecal sac ? .i have been told my hip is a bone degeneration and will get worse but i am unsure of what the outcome or treatment will be regarding my back.i get numbness and tingling in my left arm and fingers. I cant walk at all in the first hour of waking. My sleep is non exsistant.

This is all new to me , i so feel for your pain .i hope someone with more knowledge has answers for you as i dont know mine 🙄..

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Oh Millie, I so feel for you, I’ve had sciatica almost 14 yrs & my back & hip have been agony the past few years, obviously because it was degenerating & I wasn’t aware of it so I continued to work (as a care assistant) by taking whatever pain relief I could get my hands on, I finally spoke to my new gp who has been amazing, she took me off the tramadol, codeine, cocodomol etc & I am now on morphine 30mg tablets, morning and night plus the liquid morphine for thruout the day, I am also on 75mg amitriptyline at night which have helped, although I have woke today in absolute agony due to the pain in my left leg which is currently running down my left hip & leg.

I truly hope that by following this post you can get some help & support, much love xx

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Hi painismyenemy ,

Many thanks for your kind reply 😊 . I just don't have any idea on what will happen next .

It sure is a painful thing and debilitating thing to have isn't it. I have been in pain for nearly a year now, started with the tingling and numbness in my left hand, fingers and burning toes? Had nerve tests done etc .. to be told nothing was wrong yet i knew there was . They did find out i had no vit d in my body so was on 6 weeks intense course. Now i am on adcal tabs 2x daily but the damage is already done.

Sorry to hear you have woken to pain hun .i know exactly how you feel . I am not taking anything at the moment untill i have seen my dr on Wednesday and bone dr Thursday but i will let you know what happens.

You take care xx xx

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Bless you hun, it is indeed debilitating, it would be so nice if I could go just 1 day without pain but I know that’s never gonna happen now, I think I’ve resigned myself to that fact 😔 hopefully your gp will give you something to help with the pain, it must be really bad, I feel pain even with pain relief.

I too recently found out I am not only low in vit b12 but in vit d for which I did the intense couse & now take yet another tablet to add to my list, I feel like I rattle when I walk most days 😂

Yeah, please let me know how your appointment with the bone Dr goes, hope it’s good news, I will keep my fingers crossed 🤞 Good luck hun 😀

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Hi painismyenemy

How are you? .i have been on b12 tabs 10 yrs and i am also on adcal tabs 2x daily vit d and calcium . Went to see my dr , ni meds given for pain relief .he said to ask my liver dr.

Went to see bone dr. Went through my mri scan.. not happy at all 😐. Have to start physio on 9th feb ..now i know and you know any form of physical activity and i am in pain. Even sitting down i have to get up lol. Its a lose lose situation.. no referall for surgery due to all the red tape .so all other areas to go through first which i know won't work .

My hip bone has some osteophytes to the femoral neck junction? Besides the two prolapsed discs. I was told in sept last year my hip would never improve but will slowly degenerate more . Its like talking to a brick wall with these drs. They dont have to suffer the 24/7 pain we endure 😡xx

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Numbness and tingling is a pointer to vitamin B12 deficiency. Any problems from head to toe, spine and bone degeneration can also be linked to B12 Def. B12 Deficiency and vitamin D deficiency can go hand in hand. Anything to do with walking, hips and back pain can also be B12 or vitamin D deficient, not saying all this is what you have millie09 but might be worth getting it ruled out. Be aware there is a grey area in the B12 blood range which often gets over looked, similar happens to vitamin D bloods also.

PAS here on Health Unlocked (for Pernicious Anemia and B12 Deficiency members) has more information, it might be worth having a look at.

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Hi coastwalker.

I have been on vit b12 10 yrs now and on adcal tabs 2x daily vit d and calcium . My diet is good .so plenty of fish veg chicken...no alcohol non smoker.

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That's good, just so you are aware - do hope you are being given enough Vitamin B12 and Vitamin D. I was not given enough vitamin D to cure many of my ills and had to work it out myself, also I read daily of many not being given enough vitamin B12 to keep them well.

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Well i was on desunin vit d to start with last feb. But was taken off them and put on adcal tabs 2x daily of vit d and calcium. I do have 6 monthly blood tests but i think once the damage is done and degeneration sets in the conditon will only deteriorate.x

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Be aware Millie09 that some prescription pills can cause vitamin B12 deficiency which in turn can cause degeneration of bones/spine etc. Known back in 2004 that vitamin B12 deficiency can cause osteoporosis. Also fizzy drinks can cause holes in bones. Most things in our body, even bones can regenerate themselves, but like you said it depends on how far they have degenerated. Don't give up yet though, never say never.

vitamindcouncil.com for up to date information on doses and illnesses vitamin D3 can help, doses differ from NHS.

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Really ? Now i never knew that. I used to drink fizzy sugar free coke by the bucket load 5 yrs ago but now i only have plain sugar free fruit water and good cofee. I dont have much in the way of dairy though. Thank you for the information coastwalker. Much appreciated .will look 9n the link .😊

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Good to hear you are going to do some homework Millie09 :)

A good book to read is called 'Could it Be B12 Deficiency an Epidemic of Misdiagnosis' by Sally Pacholok, it will blow your mind and turn so many things upside down.

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Hi coastwalker, i have been checking up on my b12 and vit d .i am taking way too much b12. I have been taking the extra strong compound b12 2x tabs a day since 2008

This was due to other health issues at the time and malnutrition. Im going to ask the physio dr on Friday 😊. Thnk you for bringing this to my attention

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Vitamin B12 is water soluble so you will waste out anything above what you body needs. Though not sure if you know that some who take high dose vitamin B12 supplements cannot get B12 into their cells where it is much needed, it is these who need the B12 shots instead.

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Oh i cant walk too far either or stand due to my right side compensating for the left.. i am desperate to move from my flat as it has 15 steps to climb outside and another 3 inside. I private rent but now need social housing for adaptions as i cant get in or out the bath. 😕

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Millie, I honestly feel like I’m talking to myself when I talk to you, because our condition is so similar, I’ll be interested to see how you get on hun.

I private rent too & although I have a house, I still have 13 steps to climb everytime I use the toilet which I use a lot so I tend to stay in my bedroom so I don’t have to walk the stairs too often.

I feel like my life is over, I have very few close friends & now tend to see less of them due to my pain. I hate having them see me the way I am now. I’m trying to find out how I can get a walking stick as I over compensate for my left leg by limping with my right, so hopefully someone in the know may read my reply & have some idea on what I need to do.

Have you had pain management hun? I have my first appointment on the 5th March so hopefully that will help to ease my pain, I’ve been long term sick off work since September 22nd which will be 6 months by the time my new sick note runs out, I was given another 8weeks off yesterday, feel so useless most days x

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Hi hun , we are so very similar arent we. Its awful as i too feel like i am not living i am just existing

I wont know what my next step is untill this next week.

Have you never thought of social housing? I have had to go down that route due to being private no adaptations can be made for me .

You should have been given a walking stick i would have thought from pain management? Have you asked your doctor to refer you to occupational therapist to assess your needs ? I have one in 2 weeks .once they see how bad the layout of the flat is they will write a report which will help me move from here due to all the stairs outside and inside the flat.

I am not working due to other chronic illness i am on full PIP after my assesment in Oct last year .

Hope your pain eases off today. I am on the sofa in my pyjamas.. mind you even sitting too long gives me pain so i cant win .

Let me know how things go hun. Will keep in touch xxx linda

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It is uncanny how alike our conditions are 👍🏻 It’s nice having someone who is similar to talk to. I will speak to my gp about the walking stick, I have just recently been told about pip, I have just received the paperwork for it but I am completely useless with this kind of thing, I keep looking at it & my mind goes blank, it distresses me because it’s made me look at my life in a different way, I’ve always been very independent & I feel I’m losing my independence due to this.

I hope your assessment goes well next week too hun, I should think they will take one look at you realise it would be best for you to have social housing, unfortunately I live with my partner in a private rented house & we have my stepson every wknd so it isn’t possible for me to try the social housing route but hopefully you will get a home for your health that can be adapted better.

Good luck hun & keep in touch xxx

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It's always a good idea to have help when filling in the PIP form. Have a look on the Benefits and work website, They have lots of info and leaflets on there. It's more about how your conditions affect you, rather than the condition it'self.

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Hi hun .

I applied for pip last October. I had help from the PALS team writing it for me.

I had face to face assesment at home. My sister was there for support. They passed it so i do get extra money now for mobility and help at home.

I have a viewing on Tuesday for a ground floor flat .i too am private rented, but did not want to go down that route again as i live on my own with my 2 cats. Fingers crossed 🤞.. hope your ok anyway keep in touch xxx

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You can be assessed through the OT service via your council they can provide you with aids. You can have a care assessment done as well, via social services. You might think about getting a commode for your bedroom (You can get light weight ones that can fold away).

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Acupuncture is excellent for this type of pain, though see a qualified acupuncturist, not a physio

Strengthening your paraspinal & core mustles helps take the pressure off the spine it’s hard at first, but try to find a gentle Hatha yoga class you can attend, or a good Pilates teacher I found both helpful, despite tears & bed days at first.

Ask your GP to refer you to your nearest pain management clinic for a course on managing your condition. I’ve been on two, & found them very useful.

Take chelated magnesium at bedtime, water only on an empty stomach, or if you can’t jiggle your medication times, try a transdermal spray. The commercial version of the latter stings, so iI’d advise watering it down or make your own.

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Hi Badare,

That’s very interesting, never thought of yoga but I have had acupuncture, it was over 12 yrs ago when I was first diagnosed with sciatica, to be honest, I didn’t notice any difference but I will have a look for a yoga class.

My gp has referred me for pain management, I have my first appointment on the 5th March so hopefully I will feel better soon.

Thanks for your help Badare

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You're welcome!

If your acupuncture was done by a physio, it's likely that it won't work. They have only 15 hours training compared to an acupuncturists >1,000 hours. My first experience allowed me to go crutch free for 3 weeks at a time when I struggled to dress myself.

Be prepared for tears at the start of your PMP, though after the first few weeks you'll be feeling better, & you'll laugh more than you'll cry. We did Qigong, which is great for balance! :)

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Hi badare,

Thanks for your quick reply, yes, you’re right, my acupuncture was done by a physiotherapist but I wasn’t aware there was people whose treatment is just acupuncture, I just assumed it was an altogether kind of thing. I will speak to my gp regarding proper acupuncture though.

As for the pain management, I’m pretty sure there will be tears from me, I don’t do well with any kind of pain to be honest but if it helps, I guess it will be worth it. 👍🏻🤔

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Your GP won't send you to an acupuncturist, though there's a small number of GPs who do practice this. Look at the BAcC website for someone near you: acupuncture.org.uk/componen...

If you're lucky, there may be a multi-bed clinic near you which is cheaper: acmac.net/acu/

You could also try a little acupressure on yourself. I do this daily, to top up needling. This website is good: acutakehealth.com/acupressu...

Try doing all the foot & ankle points as well as LI-4 on the hand. :)

The best point for sciatica is GB-30, on the buttocks, where the sciatic nerve branches downwards. If you get a ball & lean it against a wall or on the floor, then twerk your bum against it, it's really helpful, but don't let anyone see you! I've also used the corner of a table to put pressure on this point whilst lifting my leg up. ;)

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That’s brilliant badare, thank you so much for that, I will definitely look in to the links you’ve posted.

Can I ask how you know all of this? I feel like you know loads regarding the pain management & other ways of relieving pain.

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I was so impressed after being dressed & carried in to a clinic then walking out that I studied TCM acupuncture! :)

It's great that I can treat myself, & avoid the need to take stronger drugs for my skeletal & muscle damage. I let a nurse I trust from my local PMP team, needle me on points too dangerous for me to do myself as I lost use of my arm again. It was good that I could tell her where & how to treat me.

I've had three accidents during treatment from physios at my local hospital as they are so badly trained, & heard horror stories from other people. As well as incompetence, they tell people it's supposed to hurt a lot which it's generally not, & a sign of bad technique. :(

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What is TCM acupuncture badare? I’ve never heard of that.

I can imagine it must be great knowing how to treat yourself, I hope I am able to do something similar once I’ve been to pain management a few times. What have you actually been diagnosed with & how does it affect you in your daily life?

Yeah, I’ve heard a lot of hospital horror stories due to lack of training & such like, it makes patients anxious before they even arrive.

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Traditional Chinese Medicine. The other Chinese type is Five Element, which we learned a little of, then there are other systems based on Japanese, Korean, Taiwanese styles of diagnosis & needling which I've learned on courses. Japanese needles are finer, & used in a different way, though they're good for sensitive TCM points & my friends who are a bit needle phobic.

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Hi I really do sympathize with you. I've had sore legs for the past 4 years without any relief and with no real help from GP pain specialists and physios. It's just a case of getting on with it.Can you tell me do you get pins and needles down your leg and on the bottom of your feet.I was left in a lot of pain after Christmas down my left leg and lower back I put it down to all the lifting up and down stairs .It's eased off a bit since but I'm left with this numbness and pins and needles.

Best of luck to you.

Bobk

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Hi bobnob,

I do indeed get shooting pains & pins & needles effect down my left side, I actually have it now, I woke around 4 am this morning with it & have been in agony with it for the past 8 hrs, I have already had 2 doses of my morphine liquid which hasn’t touched the pain.

When people hear I take morphine, they think I should be jumping around or something, they don’t understand that I personally would prefer not to be taking morphine, I’d prefer to be able to go out, socialise with friends & dance (I really miss dancing) 💃

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Hi pain is my enemy, I know how you feel, I have degeneration of the discs, bulging discs trapped nerves & osteoarthritis. I have been with the pain team at the hospital who have helped but as there is nothing left they can do, I have to try & cope with pain medication. I take 40mg of zomorph day & night, or oramorph when needed, Amitriptylene, at night, Gabapentin 3 daily, at night I also take Duloxetine, Clonazepam. For pain during day I also take co-codamol 30/500. Obviously it doesn't keep the pain away but eases it a little. I cannot walk far by the time I've walked from the house to the car I'm in a lot of pain. Have you heard of CBD? It's a legal part of the cannabis plant that doesn't get you high but it does help with the pain. There are a few shops opening up now & you can get it in different forms.I get it as an eliquid as I used to smoke. Best thing to do is to Google it, it will tell you all about it & how you can take it. You can get it in different strengths too. We'll good luck & I hope you find a way of managing your pain.

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Hi lindotgilbert, Thank you for your input, it’s surprising just how many of us are in so much pain, I came across this site by accident, started reading some of the posts & knew I had to join.

Your pain killers (apart from gabapentin, duloxetine & clonazapam) are an exact copy of what I’ve used in the past & what I use now, I hate taking all this stuff though, I just want to be happy & healthy again but doubt I ever will be, my gp has already said I stand little chance of that happening as my bone degeneration has progressed quite fast so I won’t ever work again & that’s what hurts the most, I’ve lost being who I was & turned into the kind of person I’ve spent years of my life caring for 😔

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Have you tried Alexander technique? Find a teacher in your area and have a few visits to see if it's for you.

Also you can look into a Tens machine, swimming or hydrotherapy, aromatherapy massage, yoga or pilates, a biome chance, acupuncture, acupressure, back and neck physio, relaxation exercises, pain clinic to learn pacing, look into a good bed and chair, but mainly a lot of patience and stay strong, ice spray or gel, heated blanket or patches, lidocaine patches, spiky ball.

Find a hobby that you can do without causing yourself more pain (I do wire weaved jewellery and love it, even turned it into a little business) as boredom and inactivity is your worst enemy when it comes to living with pain, too much time to overthinks brings you down.

I have similar issues to you and going on 17 years with it. Different things work for different people, so work through and find the one or combination that works best for you. Don't give up, don't let the pain win.

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Hi sazntf, thanks for all the different ways you’ve listed of ideas to help with pain relief & taking my mind off when the pain strikes. I didn’t realise there was so many things a person can do but I will definitely look into some of the things as I love swimmimg, well, I use to, not been for years, up until last September, all I dis was work & sleep, literally using any pain killers I could get my hands on, my new gp has done wonders for me but even though I am on morphine, it only masks the pain better than the tramadol, codeine & cocodomol did.

Thanks for your input, hope I find something I can use that will work for me, I have my first appointment with pain management on 5th March so hopefully they too can help. 😀

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Yes, the pain clinic will help you to better understand your relationship with the pain and how to get to a maintenance phase and the new normal. The pain treatments should get to a level where you can slowly build up activity. At some point in that you will be able to decrease the pain meds and continue on your maintenance. There's going to be flare ups that will come along the way, but always push for that maintenance level. Like you say, the meds help mask the pain but they don't fix the cause of the problem.

Try to make plans to do something each week or two. When that day comes do what you plan and not what you feel as you're going to be surprised that it's not quite as hard as you originally thought it would be.

Good luck for your appointment and in trying some of the suggestions. Everything crossed that something helps.

😘😘

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Hi Sazntef, thanks for the brilliant advice, I long dor the day when I can walk without so much pain & have everything crossed that the treatment I get will be beneficial. I hate feeling like I’m a burden to my friends & family, just want to be able to do simple things like making a cup of tea or be able to peel vegetables whilst stood near the worktop.

I’m really looking forward to my appointment now, there’s been so much positivity here that it gives you hope, knowing I’m not alone in my fight against pain. 😘 xx

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Top tip for cooking, I sit on the sofa to peel the veg, then I can stand long enough to chop and set them off to cook. Great lesson on pacing from the pain clinic. Let us know how you get on 😘

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Hi Sazntef,

I do sometimes do that, if I have company, whoever comes usually cooks for me or makes up a batch of things that I can micro later, it’s not often I have to cook much, my daughter sees to that, It’s awful feeling like you’re a drain on your family though which is how I feel when she does so much for me but she tells me off lol 😂

Thanks for your ideas, they are very helpful, I just wish I could be independent again 😔

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I am goinb to have the Bowen Technique had it many years ago for back pain and it worked for me then it is similar to other techniques .

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Hi Pearl72,

What exactly is the Bowen Technique? I’ve never heard of it x

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Its alternative holistic therapy it targets the area of pain quite a gentle process non invasive . First session i had was 15 years ago when i pulled a muscle in my back it helped me to have this in essence i think it worked as a relaxent to my body . Since then i have done some of the therapy on myself especially the pain in my thigh pressure points in my buttocks gently pressed has helped .

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I’ve seen a few posts where people have said this kind of therapy is helpful, so, it’s another thing for me to look into.

Like I said before, at present I’m on morphine & amitriptyline which do help (they literally mask my pain) but I don’t want to have to take these the rest of my life.

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Sorry your in pain and know the feeling that you want to combat the pain that is why i will not let it beat me .

So trying alternative methods hopefully will help x

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I certainly hope so Pearl72, life is hard anyway & I honestly feel like I’m worthless these days, I have spent years as a care assistant & loved my job, helping people with their day to day lives & now I feel I’ve become 1 of them.

I would give anything to not have this horrid pain & be back at work but because of the degeneration on my discs, my gp says she doubts I’ll ever be able to return to work doing that job but it’s the only job I know & love, plus at 50, I feel too old now to start afresh, hate this disease 😢

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Your just young and i think work however small the hours put in takes your mind away from the pain .

Obviously no work to the degree you did with lifting i have experienced care work too .

Even being retired since like you early retirement was forced on me but i have done voluntary office work for a charity not lately though with the pain .

If i can get the pain to an acceptable level i will seek a desk job again .

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Bery wise Pearl72, I live in hope that something will help me learn to live with the pain at an acceptable level & return to some form of work, maybe voluntarily as you have stated as that is something I hadn’t thought of so thank you for taking the time to speak with me 🙂

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Your welcome if wd cant support each other its a poorer world . X

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Very true Pearl72, again, thank you for taking time to talk, much appreciated x

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I had surgery for this a year and a half ago and for the most part it's been successful. Prior to surgery I took up Pilates to help whilst also taking 900mg neurontin a day. Have you tried any exercises, walking or swimming. What options have you been given if any

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Hi Annkaren, I haven’t been given anything yet, I’m waiting for my pain management appointment on 5th March, I do walk (small distances) but that’s about all, I don’t really know what else to do, I’m worried if I try to do something before I’ve been seen they may tell me off plus, I must admit I find it daunting wondering what they will expect of me

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Well keep up the walking if it helps and try not to sit on couches too long . If you can swim some gentle laps will help. Good luck at your appointment and hopefully you will get sorted

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