The Back Pain Emporium is Open For Business. Browsers Welcome. Thread 7

[MatildaTheCat]

For anyone experiencing back pain it can be a terrifying time. What is wrong? Who can help? How long will this last? We,on this thread are here to support you;offer empathy and help to navigate the almost impossible task of getting a diagnosis and the right treatment.We are not doctors but people who have trodden this path slowly and painfully. We also chat a LOT and welcome all newcomers. It is strictly non competetive regarding pain and no niggle is too minor.

Those who have long term back problems know that the best way to help manage back pain is to internet shop for shoes, bags, and back support devices. Those who are new to back pain, these are important lessons to learn. And here within this thread is where you will learn those lessons.

You will also find other helpful advice on pain management, different treatment options from hydrotherapy and physio to surgery, experiences of others navigating the big and scary medical world, both private and NHS (and abroad from the UK) too, as well as issues around work, being a parent while managing pain and disability, and the impact on the relationships around us. Not to mention the pain of dealing with claiming disablity benefits. .

Between us all, we have a huge wealth of knowledge and experience, and more than the practical advice, the jargon and information, we know what back pain is like, how much is affects everything around us, and sometimes, all we need is to have people listen who Get It.

We talk painkillers regularly,sometimes drink , have hot water bottles and wheat bags galore, and hold hands a lot. It's potentially all very Unmumsnetty as we do actually show some lovin' from time to time, although we Never Ever call each other hun.

If you have advice, need advice, need a hand to hold, want to do some shopping, then come in. We are friendly. We talk a lot. Come in, have a and say hello

Previous thread for anyone interested

hexie what's with the name ? It is you right?

For nerve pain, amytripyline is the best that I found personally, out of all the nerve meds. Unfortunately, it does take a good week or two for it to start it's magic, and in the meantime (and for a while after for me) the side effects were not great, proper hangover groggy feeling the next day, loss of words etc. Not great if you have plenty of active things you need to be getting on with.

Are the fractures causing pressure on the nerves, or is it the inflammation from the fractures that are causing nerve inflammation? Have the docs said anything other than 'get on with it?' such as whether perhaps injections could work? re exercises for thoracic area, I can't help there, hopefully others might know?

ali re numb leg. I think, that it's likely your numbness in your leg is nerve damage following surgery (did you have it before?) if it came on quickly and gets worse, definitely keep an eye/seek medical advice, but if it's constant since surgery and is getting no worse, it's probably not anything that can be fixed now, but is most likely nerve damage. Same with any incontinence, if you are in any doubt at all that it could be linked with your back and not something else, I would get some medical advice. Slow onset CES still happens relatively quickly (over weeks or so, not years, I think). I still have numb patches from my first 'prolapse' but not like it was before. With CES it's new symptoms, that are normally pretty acute in their appearance, if it's acute CES, which although still rare is much more common than slow onset CES. It means that something that was not pressing on the spinal cord is now pressing on the spinal cord, and is a medical emergency because if it is not dealt with quickly, the damage can be irreversible, which is why I always, always advise people to err on the side of caution if there is any concern and get to A&E. It's so much better to be sent home reassured than to leave it. Although, sometimes, it can take some insistence at A&E to get them to listen if the docs on call are not neuro trained.

mags re modic changes - the inflammation caused by them can really fucking hurt and movement does. my consultant (his registrar) at my last review post surgery said that the endplate damage can be the cause of considerable pain. And from what I have read, if there is free disc space (where the disc has dehydrated and moved away from the endplates), tiny nerve endings can grow into the damaged endplates, and that is where a lot of the pain can come from. I think that's how I read it. It makes sense to me, and seems to explain some of the pain that I have that is not really explained in other areas of medical literature, or, where I think 'but exercise is meant to ease it', because as we move, those tiny nerves move within the space, and the disc that is there, or the vertebrae itself, surely will grind on them, so actually fits with why the fuck I can't walk far. That last bit's my own sort of theory based on the info I've read about the endplates, which is quite sparse. But, I like doing that. There is not enough answers to 'why' in back pain research. There is a lot of 'this causes this type of pain, that causes that' but why does it? So I fill in the blanks!

My physio looks at me with such pity, in a way that I just know means 'there ain't a lot I can do to help you' but he is trying to be upbeat. Acupuncture is working, albeit for a few days at a time (less so this time). He's keen for me to not go longer than a week without seeing him, which surprised me as two weekly seems normal. System was down on thursday and he said he was on leave most of coming week, and if I could not get an appt for the following monday/tuesday latest, don't book an appointment, call and ask for him to call me back, he'll reschedule some of his appointments. I don't know if I should be pleased he is conscientious or worried he sees me as someone that needs it so badly he will shift his other clients around

Pavlov, although it might be a long shot, since acupuncture is helpful it could be that a Spinal Cord Stimulator could be helpful for you at some point. I know you aren't ready to be at that point yet but I have heard quite a lot of positive stories particularly with the Nevro which is also good for back pain as well as leg pain.

matilda I am going to discuss it with my pain clinic doc when i next see him for my two month follow up after my trigger point injections. did I say two month follow up? it's been 3 months, and no appt is forthcoming as they are 'very busy'. Is it the Pain clinic that arranges it or is it the surgeon, as it's a surgical procedure?

I do think I'll probably have to be in Queen's Square (dare I?!) as I suspect that budget ishoos in the local hospital will hinder anything like that happening. I have heard rumours that almost all elective surgery is being cancelled due to waiting list/budget issues, which confirms entirely my thoughts around why my first consultant would not proceed with second surgery despite initially saying he would discuss it with me, and being really cagey about what was wrong, and despite there being a clear surgical target but not telling me that!

Acupuncture is like magic for the short time it lasts. I leave there walking better. Although feeling a little fluffy cotton wool headed. So, if the SCS works, for longer than a few days, that would be great!

Right now, i'll consider invasive alternatives, but not fusion. I am not ready for that route. Before that happens, I want to be absolutely 100% certain that there is no infection or underlying reason for my spine deteriorating like it is/causing the chronic pain, as once it's done, there is no going back.

Thanks for that Pavlov very reassuring as the numbness is just post surgery and hasn't gotten worse. Bladder is same as last 30 years and bowel well that's a long story but fairly certain nothing to do with back. I was worried for a minute my head in the sand approach might have done me some harm in ignoring things for years on end but probably not phew

You guys all know so much more than me (which is my own fault) ... good on you for not accepting things but doing your own research. I'm old school (and old) so I just do what I am told but research things now (although it can also scare the bejeesus out of you). Agree re the fusion Pavlov .. absolute last resort

Thank you, Pavlov. No, it's just me, not me

I think the GP thought the fractures are maybe causing pressure on the nerves. They are old fractures apparently but I knew nothing of them until the last couple of years. No mention of injections. I'll start the amytripyline again tonight. Thank you

Hexie, as another Pilates fan I'm sure there are stretches etc that can help the upper spine but difficult to explain on here. I do one that is a roll down that becomes an upwards stretch with interlocked fingers and then a wide sweep of the hands if that makes sense? I have to try to stretch backwards a little whilst maintaining a backwards tilt of the pelvis ( to protect my lumber spine damage). It's a niece stretch.mother wise perhaps some swimming with soe water stretches? Good luck with the amytriptiline, that plus gabapentin does help me. Another poster ( You ) with similar sounding problems is having success with pregablin plus her opiates.

Hope that helps, sorry, I can't remember your history so please disregard if you cannot stand or are allergic to water.

Sorry for the typos, all very family orientated thanks to ipad.

Pavlov, it was QS I was offered the Nevro although I think it's quite widely available. There is a Nevro Uk FB group with lots of experienced people there. Have to say that though it sounds quite successful for many, it also sounds much more of a big deal than the doctors imply. I guess they simply don't see people at home trying to get on with things.

Thank you, Matilda . Will have a go at some gentle stretches and see how it goes. I can feel myself starting to seize up again because I'm doing my best to avoid any movements where I feel the pain. Bloody irritating . Haven't been swimming for years, I'm sure it would be lovely if I had the pool to myself

Someone told me about this thread, after I posted somewhere else. I have 2 slipped discs in my back and a trapped nerve running down the whole of my right leg. Have been suffering from it since I was pregnant with my son( they misdiagnosed me with spd for a long time). Now about to go into surgery later this month to cut away the disc putting pressure on the nerve. Not too sure what to expect and I am petrified of hospitals and needles but I just can't take the pain anymore.

It's getting worse and I am finding it hard to sleep and to want to walk down the shops. Very hard trying to keep up with an energetic toddler. My mood is going down, last night I was in tears. How do you keep your mood up when dealing with long term back pain? Or any tips to help sleeping?

Welcome Bella and sorry you are here.

Sounds similar to my history (8 years post surgery now). Before was terrible yes and I cried lots especially when I could no longer make it to work (they asked me to leave I was that stubborn lol). After surgery the nerve pain was gone instantly (although I have nerve memory but its a ghost of what it was). Full recovery can take years (4 in mine) as in ability to improve and I got back to 80% fit in the end but I am old (and fat) so you should do much better than that. Takes about 3 months to get back to walking and working, etc. Things I wish I'd known before surgery 1) get your hair cut (I couldn't step over the bath to get into the shower), 2) get OH to take time off otherwise you are trapped in bed with a tray of stuff to keep you going 3) have a bed or sofa you can lie on in the lounge as sitting takes a while to master for any length of time. They will tell you to keep on the move and it does help. Even now I rarely sit for more than 30 mins without a wee stretch/stroll. For sleeping try a pillow under your knees .. it makes turning difficult but does help. We got a new bed and new chairs post surgery but I didn't get that right first time round so shop around and try out for ages if you can afford new stuff.

Can't think of anything else but other people will add stuff. Or just ask!

Thank you. My oh has to take time off anyway because we do have a toddler. There is no way I would be able to cope with ds without some help after my operation. Although his workplace is being difficult about it I can only just manage on bad days now. Ds watches Toy Story on those days

My mood is dropping bad, I have a history of depression and I just feel really down that I am always in pain. The last few days have been particulary bad.

I am only 23 and a good weight so doctors do think I will have a good recovery time. Fingers crossed!

Thank you for the tips, I will certainly try them.

I have depression too so don't be afraid to talk about that too in here.

23 and slim - you will be dancing around in no time (fingers crossed). Have you a date for the op yet? Were you offered alternatives to surgery?

No date for the op but I do have my pre-op tomorrow so it should not be long. I am hoping they give me the date tomorrow because my oh's boss is putting pressure on him to know the date.

The op was decided on early on, I have had physio when they misdiagnosed me with SPD and the injections are a smaller success rate.

As I have been suffering for over 2 years and it does impact my life quite a bit, as well as my age it was decided I was a good candidate for surgery. I am very scared about it, I am awful with hospitals. Also not sure how my ds is going to be like when I can't pick him up or do active things with him for a while.

Ok just checking (which is more than I did beforehand but the ladies in here have taught me well!). Its normal to be scared and no-one LIKES hospitals but its very brief (1-2 nights at most) and there will be drugs. You will leave there feeling (and walking) like 1000 years old but you should bounce back really quickly at your age and see progress quite quickly. Just don't try to do anything daft too soon (cleaning, lifting, reaching for stuff). Toddler is too young to understand but he'll get used to it for a while I'm sure. If its keyhole surgery I am assured progress is even quicker (not what I had). Good luck!

oh and take your own pillow to hospital - the ones they have are like sacks of concrete - you'll thank me later

Great to hear that finally someone is taking you seriously, Belle. That's a long time to suffer. What meds are you taking? Obviously you should begin to feel better after surgery but in the meantime and for the post op period, do check you are getting the best meds possible. If you care to post we can advise on what has helped up.

I also have a very unflattering but supportive lumber support belt from Amazon which is helpful and might aid toddler care a bit. I love heat in any form, patches, hotwater bottles and heated cushion. I do find moving around, doing my exercises and swimming helpful. After my first op I was allowed back in the water after three weeks and it sort of got me moving.

Finally, do ask your surgeon ( not nurse) for a brutally honest assessment of how likely the surgery is to be successful and to what degree. Some are woefully over optimistic and ( sorry) after a very long time of severe compression the nerves are less forgiving in terms of recovery. That's not to say you won't make a wonderful recovery, just ask your surgeon to be really honest.

I will pm you.x

Well because I started getting back and leg pains in pregnancy it was assumed I had SPD. After the birth of my son, I was repeatedly told that it was fine, it would go away soon etc. It was only really when I demanded a scan, that the slipped discs were discovered. Waiting lists here are awful so I have been waiting 8 months for something to happen.

I take tramadol currently, but have tried others. Not that it is currently doing much. Am going to talk to the consultant tomorrow about other medicine while I am waiting for my op because I am just exhausted where I am not sleeping properly which of course means I get more depressed.

I am using a hot water bottle, and also I do have a hot bath because that too helps. I do try to keep moving and I also go swimming and that helps a little.

I do feel bad for my toddler. Some days I feel ok and can take him out(we recently went on holiday) and other days like yesterday and today I don't feel up to much at all.

belle I will post properly later on, but just wanted to say this is the absolute best place for you to be right now, and for the coming weeks/months. Wealth of advice, lots of experience with discectomy and other spinal surgery, and some of that while having toddlers/young children (including me). Stay posting, and reading. And get ready for internet shopping as there will be time to do that while you recover from surgery and it's one of our favourite therapies here

Hexie I get upper back lock problems and find it helpful to warm up by gently shrugging my shoulder then rotating my shoulders and then arms. Then arms crossed onto opposite shoulders (as if hugging yourself) and gently twisting right and left (keeping hips straight- can be done sitting. If I am locked up I can often hardly move but I try to move the bits I can for instance if I cannot twist left I try to gently twist right- sometimes this frees things up a little. I think you need expert advice for more than that.
Pavlov thanks. I also need to understand.

Thank you all for advice. I had my pre-op today so just waiting for the operation appointment to come through once blood results come back. I am feeling really really down though and have been crying a fair amount today and the past couple of days. I have a phobia of needles(silly but I do really get upset) I was fine until the nurse told me she had to do it again in the other arm because not enough blood collected. Pain is bad, not been sleeping and I just feel completely worn out and miserable. Going to try and book a doctor's tomorrow, so I can talk about different pain meds, helping me to sleep and my history of depression because I do feel myself slipping back.

Hi, have posted before but now need some new advice. Have had sciatica for years now, had an MRI probably about three years ago and have slipped disc. Had three lots of injections now and physio.

However the pain is getting really bad now, especially at night. Painful to sleep on side, so I tend to fall asleep on my back but then wake up a few hours later with absolutely terrible pain. It is so bad that I cannot move, it takes me at least 30minutes to roll onto my side, which helps slightly. Last night was so bad I was in tears. The pain is mainly in my lower back but also down my leg. Is this level of pain normal with sciatica or could it be something else?

I haven't been to the doctors recently about it all mainly because I think the only option left for me is surgery, which I am not keen on. Is there anything else they can offer me?