Endless Back Stories. Support For Back Pain and Sciatica. Thread 8.

[MatildaTheCat]

Sadly there seems to continue to be a need for this thread as many of us continue to suffer from back related pain. There are many causes, the pain and misery is shared here and hopefully some comfort derived from knowing we are not alone. We are strictly non competetive and newcomers most welcome.

We can offer advice on medication and effective drug combining plus other methods of pain management.We have used different treatment options from hydrotherapy and physio to surgery. We can share our experiences of navigating the big and baffling medical world, both private and NHS 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. . We are not doctors just people who have trodden the painful path of obtaining a diagnosis and dealing with our conditions.

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.

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

Our Last Thread

Cauda Equina Syndrome. A must read for severe acute pain with Red Flags. Please Read

Constructive Rest. A Simple Exercise Anyone Can Do

May I join or lurk as my DP is the one in pain.
He has a bulging disc with associate sciatic pain and has done for a number of years. On a fairly standard cocktail of drugs - Naproxen, co-codamol, amytriptaline, and has pregabalin during flair ups. He can't take tramadol. He has also been having 3 monthly epidural injections of steroid which initially worked well but have been becoming less effective.

He is now on the waiting list for a discectomy and has been told 8-12 weeks wait. I have a couple of more practical questions for anyone that has had such a procedure. Firstly when is he likely to get a surgery date? Will he get days or weeks notice?
Secondly.- the hospital he will have his surgery in is about 2-3hr drive away. I understand that he is likely to be discharged 24hr after surgery. Will he be able to tolerate that long drive (as a passenger! !!). Any advice?

Finally - as his DP anything I can do that will help him?

Thats progress Meg sounding positive!

Hi Keep. In my experience I waited about 3 months for a date and got the date around 6 weeks prior to op. Pavlov can give you advice re long journeys as she did it. I had less than an hour and used lots of pillows and laid the seat right back and held on for dear life. Its not fun but it won't kill him honest! Hubby remembers that journey more than I do as he was freaked out trying not to hit a bump.

Yes, Meg. Hope you get the MRI soon. Keep us posted.

Keep, I was given notice of about a month but was actually cancelled the evening before due to an emergency. It was then another 10 days wait and actual admission about an hour before surgery. I had been to a pre admission clinic for all the checks so it worked out ok though rather stressful. I stayed 48 hours the first time and 72 the second.

The trip home as above. Drugs, pillows and a reclined seat. If you know someone with a comfy car beg a lift. Seriously, my dh has a 'good' brand of car but I find it a very hard drive so a comfy car does make a difference. I actually can't remember driving home, think I was given a huge dose of oromorph as I left. Let us know if you need any further tips and good luck to him with the op. Please do tell him from us that recovery is SLOW. Forget 6 weeks they will tell you. it takes ages.

Thanks guys.

Did you get what you hoped for from the op?
I've read that it can be very effective for the leg pain but I think it is the numbness which bothers DP most and the improvement in numbness seems to be less likely.

His job is very very active. He knows he will be signed off for 6 weeks as that has already been discussed. How long will he need in reality?
This concerns me a bit as he works away so once he returns to work I won't be able to 'keep an eye on him'...

Most people I have met have taken around 3 months to get back to work but there is always the odd one takes much less (depends on how fit, how old, how long they waited for op and many other factors). His work should arrange some kind of gradual return for him. I continued to improve for 4 years (yes 4 YEARS) so no giving up on anything. Its so slow progress you don't notice but the needle sharp nerve pain should (!?) be gone by the time he wakes up after op but again we are all different. I still have numb bits 8 years on but its better than that acute pain all the time.

Thank you. I've done lots of reading about the op - but it's the 'real experiences' you don't hear much about.

He is very fit - or as fit as his injury allows. He is in the forces. He has already arranged 6 weeks sick leave (well has arranged that will be put in place as soon as he gets a date). He religiously does physio to help at the mo so I'm hoping that will help.

He is very worried about the op going wrong - losing bladder and bowel control.

I'm more worried about the aftercare. Like I say the logistics of getting him home to recover. The logistics if they want to keep him in for more than 24hrs (as I will have the 5hr round trip to fetch him with childcare etc.). The logistics of him returning to work (getting additional time off sick is not as straightforward as Joe public - it will be done but he will have to go to work to do it which will be another 6hr round trip each time his Dr wants to review him for a sick note). Getting prescriptions for pain meds is a PITA cos they are not NHS prescriptions per se.

We will manage. It's just working out the logistics of it when so much feels unknown at the moment.

Sounds like he is doing everything he can to increase his chances of quick recovery. I am old and fat so took the whole 3 months (and still have issues). The bladder/bowel thing is pretty rare (I already had issues there and not any worse) but I'm sure someone can step in and give us the stats (if you want them!).

Most people only stay 2 nights max so if he is fit he might well be out in 24 hours but you can't predict that one .. you will have to have plan A and B in place. We didn't realise what a useless lump I would be immediately after op and hubby went back to work and left me so it was fun (not) leaving me a tray of drugs and food ... at least you are planning .. we went in blind oops!

The forces can be pretty good when the chips are down (family experience) ... I'm sure it will all be fine. As for the meds .. paracetamol is the best anyway so stock up on that and he should get a couple of weeks supply from the hospital.

My experience of recovery was not good but I suffered complications. It eventually transpired I had developed severe scarring around the nerve root causing continuous pressure on the nerve so recovery was hopeless. Like your dh I was very fit and active. Oddly, although disabled now, I still am quite fit. I swim well and can walk a fair bit albeit in pain.

I think the doc swill be very cautious in prognosis re nerve damage and recovery.mit seems broadly that the longer you have had altered sensation the less likely it is to fully resolve but the bottom line is that we are all different. Doing physio etc isn't really going to have any bearing on this IMO. Getting strength and stamina back is of course helped by exercise and REST! I would say that roughly after a week or so start walking a little further each day then build in more activity and back care exercises but resting is vital. He will be very tired for a while. If he feels fantastic very quickly he must still hold back and rest etc. some surgeons do keyhole surgery which is a quicker recovery but most have a wound of about 3-5 cm.

Returning to work depends on so much. I find sitting almost impossible, others have other issues. The forces will be keen to get him fit and keep him so hopefully will be very supportive as long as he's doing his bit. Regarding hospitals and childcare etc I have to say they simply cannot accommodate your childcare issues etc so you need to make sure you have every base covered. Can the forces offer support with this?

Let us know if we can help any more. So many of us have been through all this and it's awful.x

Eeek. We have a date. He will be getting the op before Christmas.

Hello all, hope the quietness on here reflects low pain levels?

I've been pretty busy with no flare up for a good while which is good news. Maybe my switch to pregablin has helped? Who knows. I'm being careful to build in some very quiet days to make up for the more challenging ones. Yesterday I went to an event for an hour which was sitting followed by a lunch with friends. I did stand a lot during lunch and was suffering but SO much better than festering at home. So today is fairly quiet, though there is a nasty pile of ironing that I have been ignoring . It can wait, surely?

How is everyone else?

a quick intro
Osteoarthritis, herniated low disc causing pain, foot drop, some saddle parasthesia, ME, knackered left shoulder
Bugger all pain relief - paracetamol and occasional codeine
At least if I'm in pain, I can't move much so can't make it worse. Surgeon told me no lifting or carrying of anything more than 5 kilo, no repeated bending.
Pacing is brilliant - I live my life by it
I also take a shedload of vitamins and minerals.

Welcome TheExMotherInLaw there are quite a few of us on here with back problems and chronic illnesses. It's tough going but this is a brilliant support network.

Quiet day for me. My neck has seized and the rest of my back is following. I'm trying to find an osteopath or chiropractor where I live that has some space and is willing to deal with me. The pain and tension is horrible and so distracting.
I have a dysfunctional autonomic nervous system and the tight muscles in my neck are making me tremor which stresses me out and that tightens the muscles more

I vote for ignoring the ironing Matilda it can always wait - until it can't.

Hi- I've just started a thread on the 'General Health' board about DPs lower back pain. I saw this thread after my post, and realised it was a better place to hope for some help.

I've seen how debilitating back pain can be and I am sending you all unmumsnetty hugs.

We are due to see specialist tomorrow and I'm afraid he's going to pretty much tell DP to go away and man up.

I've replicated the post from my thread below (I hope that is ok). Any advice would be very much appreciated.

DP (early 40s) has struggled on and off with lower back pain for years.

For the past two years it has worsened to the extent he is is pain a great deal of the time. It makes him anxious and is really impacting on his equality of life.

GP was initially unhelpful, so he saw a physio who did manipulation and prescribed exercises. DP did exercises and saw physio religiously over 9 months with no improvement. Physio also arranged shoe supports, which don't seem to have helped.

Physio then suggested a specialist, DP went for an initial appointment, specialist couldn't be sure if pain was wear and tear, ligament pain or an over activated pain reaction.

Specialist suggested a course of sugar injections. These weren't available privately, so DP paid for these himself. They didnt help.

In desperation he went back to GP and asked to be referred back to same specialist privately (tbh I was loosing faith in specialist but DP likes him).

Specialist again said he doesn't think it's anything he can put his finger on and begrudgingly agreed to do an MRI. He feels confident this will show 'standard 40 year old wear and tear'.

We are due to see specialist for results of MRI tomorrow. DP feels sure he will just be told to 'man up'. I want to keep looking to find out what the problem is and how itcan be helped.

My lovely patient DP is trying so hard to continue with life as best he can. He stays as mobile as he can, but his life is becoming increasingly difficult and his pain affects standing, walking, sitting and sleeping.

I would love any advice anyone can give. Especially as to what to ask Specialist if he draws a blank tomorrow. The hopelessness of it is hard for DP to cope with. Surely there must be a different doctor who could help, or maybe a pain specialist (so far he's recommended over the counter codene and said to avoid neurofen as this may mask aggravating activities).

Any advice very very gratefully received.

Hello, The ex and Freshstart. Sorry you need to be here.

fresh, I'm so cross for you and your DP. Sadly so many people are fobbed off for far too long. I guess you need to find out what happens tomorrow and what is recommended.mits shocking he has waited so long for an MRI. Does he have leg pain or altered sensation at all? I have heard of and had many treatments but never heard of sugar injections...is this autocorrect for steroids or is your specialist very woo? Indeed,what exactly is his speciality? Orthopaedics, neurosurgery?

I suggest you write a list of questions for tomorrow and write down the answers. They might include:

What is my diagnosis?
What treatment do you suggest?
What can I do to help myself?
My pain relief is inadequate, what further medication can I try?

And ask for a copy of the MRI report. don't leave without it.myou should also request a copy of the MRI disc. This is a pain involving forms, ID etc and costs about £10 but is very useful if you go for a second opinion.

And yes, if you aren't happy with the outcome definitely seek another opinion. Go somewhere top class, you are entitled to get referred wherever you like. My second surgeon immediately pointed out the cause of my agony when the first one had said it was all fine. .

I personally would want more proactive treatment before a pain clinic referral unless it's for something specific like more injections. A lot of what they offer is psychological help which is great but your DP doesn't even have a diagnosis yet. His GP should be well able to sort out pain meds. Why avoid NSAIDs? Unless he has gastric problems or asthma etc they can be very useful. If he has leg pain then anti convulsants work very well and opiates with paracetamol are helpful,too. Of course it takes time to get all this going. On days of absolute bs plasm and misery a stock of diazepam is really useful. It takes a good GP/ patient relationship to achieve all this and time to get over side effects.

I love heat and am glued to my hot water bottle whenever possible. I also have regular massage and Pilates based exercise both land and water. When up and out for long periods I use a cheap lumbar support from Amazon which is really good. Look up Pacing and pain management because boring as it is, it works!

Sorry this is so long but clearly you've upset me with such crap attitudes from health carers towards back injuries. Hope it's of some help and do ask away and do let us know how tomorrow's appointment goes.x

Sorry, The ex, didn't mean to ignore you . Just out of interest, why no analgesia? Are you just hardcore? Hope so and not because nobody will give it to you.

hi Matilda - np - I didn't feel at all ignored! Thanks for the welcome.
I'm not hard-core at all, and sometimes feel I would kill for tramadol. I was given naproxen for two years, but taken off it 6 months ago, because of the risk of internal organ damage. I'm seeing GP Wednesday, and taking my sis to help. I think that having been diagnosed with ME means that every ache and pain is written off as somatic. I think that I have been in pain for so long that I have become used to it. Also, I think that there is an expectation for old people to suffer some aches and pains, and that I'm overstating it. (I'm 60)
Two things I have found very helpful - one is my chiropracter - she won't work on my lower spine, as it is too dodgy, but does do wonders for neck and shoulder, using manipulation and acupuncture - the latter is almost magical in its effectiveness.
The other is my tens machine. I found that although the main pain itself is caused by a nerve being compressed, that causes the muscles in the area to tense up, then they go into spasm, causing absolute agony. The tens machine relaxes those muscles, so I am only (hahah) left with the original pain.

Good luck with the GP. I feel so lucky to have one who actually encourages me to take my meds regardless of my pain level to avoid the peaks and troughs.mit took ages but I now mostly have better pain control than before. I've been on naproxen for nearly 4 years. I have the enteric coated one and am meant to take omeprazole but often forget.

I wonder if Alexander Technique would help you? I suspect it would as its all about losing unwanted tension from the body.there is a link to Constuctive Rest in the into which is a mainstay of AT.

Oh, and 60 isnt old!! You should have at least two decades of decent quality of life ahead of you. Insist on being treated holistically and to the very best standard. Have you been referred to an ME clinic?

Matilda, thank you so much for the detailed reply. I'll try to answer your questions.

DP doesn't have altered sensation generally. He has pretty constant pain, often worse lying down and sitting. He gets what he describes as spasms fairly randomly. If he misses a step when walking he gets very painful twinges. He doesn't get pains down his legs.

Specialist describes himself as orthopaedic soeciakist. Interestingly he is a 'Dr' not a 'Mr', and only seems to work privately (DP going via BUPA atm).

Sugar injections are also known as prolotherapy I think.

To be honest am loosing faith in the specialist. He is completely unsympathetic, ignored DPs honest answers regarding how depressed and frightened his back pain makes him.

What type of second opinion should we ask for if tomorrow brings no answers?

Thank you again for all your help.

Could I join this? Am crippled with pain in my upper back and neck. Currently waiting for a breast reduction to reduce the weight of the front. Meanwhile I have to teach in a drugged up hideous painful fog.

Currently on Tramadol, paracetamol and just started 50mg pregabalin which seems to be doing zilch. GP has referrerd me to a pain clinic. Do they do anything helpful?

I've been told to swim to improve my back. I can't put my head under the water as I wear glasses and cannot see a thing without them. So I have to swim like the Loch Ness monster with just my head above water. I'm not convinced this is helping my terrible terrible neck pain.

No, I have been refused referral to a proper ME clinic.
I was referred for CBT and GET, which made me quite ill. I put my all into the damned graded exercise therapy, using all the 'safety cushion' of energy that I had. It ended up with my heart rate peaking at 164 bpm after a walk of a couple of hundred yards, and it didn't go below 100 bpm for over 10 hours, despite almost all of that time being lying down. I have since joined a support group for ME, who explain all about the dangers of GET.
AT might help, but I'm done with new therapies - I think I have enough physical awareness with the yoga, etc I did for years, to work with what I have. I need the chiro's help if I've been on a long car journey, or slept awkwardly. Actually, she's the one who realised that it wasn't 'just' a bout of sciatica, but the beginnings of cauda equina syndrome, and bullied me off to demand an MRI - which the surgery twice refused.
As for life expectancy - I was surprised to reach 60, and wouldn't care if I dropped dead next week. No, I'm not depressed, I'm just fed up of the pain and the loss of what was important to me in life.

Oh goodness I have missed so much .. stopped checking when it went all quiet. Hello all new people waving.

Can't add much (Matilda does it so much better). I do feel the same sometimes Ex* ... I was depressed though (and am 57). Pain is .. well a pain!

Have to go .. I have a kitten and she squeak like mad if I leave her so am suffering guilt

Morning all. fresh, well I have learnt something new . Prolotherapy is a real thing. I must say that after a very large number of Pain Management consultations I have never been offered this and according to the stuff I read, I would be a suitable candidate. This leads me to believe that some of the top people don't believe it is a good treatment.

Good news re the private health cover as your dh should have been given his MRI disc when he had the scan. If not, do ask for it. From all you say it does sound likely that he may have a disc problem. Unfortunately where there is back pain rather than leg pain surgery isn't very successful so management with conservative therapy is usuall recommended. Having said that wait and see. I think I would still be hot footing it to a top spinal/ neuro surgeon for an opinion.

Let us know how it goes today. I agree your current chap sounds as if he's out of his depth and hasn't helped in the slightest so far.

Oranges, hello. Can I suggest just walking and exercising in the water if you can't swim ( you can actually buy prescription goggles but get the feeling you aren't a keen swimmer?) I actually paid a physio to come to the pool with me and devise a set of hydro exercises which I am still doing some years later. I also incorporate some Pilates exercises and swim. However just walking forwards and backwards and sideways is good for the core muscles if you hold your core tight and work at it. I'm also going to suggest the constructive rest at the top here because it helps to realign the spine correctly and lose the muscle spasm. The Ex, I totally get the feeling of 'no more therapies, thanks' and very nearly cancelled my AT lessons ( lucky I got it on the nhs). All I can say is that I found it so helpful that I am still going privately every few weeks to keep me in the zone. Constuctive Rest only involves lying on the floor for ten minutes listening to a nice lady talking so maybe give it a try some time. It's supposed to be twice daily but I never manage that . After you get used to the process you can listen to the radio etc. anyway, it's helped me and I'm a bit zealous I guess.

oranges, sorry, I meant to say the pregablin does take a while to kick in and you are on a tiny baby dose. I'm now on 75mgs/ 3-4 times a day and seem to have better functionality since starting so stick with it plus the other stuff and you never know. I don't know much about upper backs and necks, though. Pain clinics are variable in what they offer but are likely to offer physio and self help therapies as well as injections etc though maybe not for your condition. Teaching must be really hard, many sympathies.

Oops, I've written another essay. Sorry.

Zealous is good!

Hi all, thank you so much for your helpful posts. Wishing strength to all on here who are suffering.

So DP had his appointment today. Specialist showed us the MRI scans (wow technology is amazing). He felt all was normal except for one disk in the lower back which he said was bulging. However, he felt that in his opinion there was sufficient space left within the disk for the nerves, so he said that it was not nerve pain. He said the pain would most likely be due to irritation of the dura, I now realise I don't fully understand this so will have a google.

He said that the disk itself could never be improved, and that in fact many of us have disks like this but without any pain (which will fuel DP's fears that he is just a wimp). He said it is sometimes treated with an epidural steroid injection, but he actually gave one of these to DP before the course of sugar injections (prolotherapy), and it didn't seem to help.

He recommended a course of sessions with the BUPA physio. He said this won't change the disk but might help DP to get less pain from it.

At this point DP unfortunately had a bit of a 'moment' and felt faint and sick so spent rest of the appointment with his head between his knees. I think he was overcome with relief that it wasn't serious, frustrated that there was no 'cure' and queasy from looking at the images.

I asked specialist about other options and he shrugged and said DP needed to give physio a go and that there weren't many other options. I asked about pain relief and he said hopefully physio will lead to less pain, but that all medications had unfortunate side effects and it was a tricky thing to know if they are worth it.

I'm annoyed that I didn't push the specialist further but it was difficult and DP was really struggling which threw me as he is usually the strong one!

So, physio it is. I can't help wondering if there is an element of a nerve getting trapped at times as sometimes DP gets what he calls a spasm of intense pain- when coughing, stepping off kerb or sometimes for no apparent reason. Specialist felt that this was more likely due to dural irritation.

Sorry to type such a long post. I am frustrated for DP, but don't want to interfere to the extent that he feels like I'm taking his control of this problem away from him.

Thank you again for your helpful posts. I'm glad I could bring a new treatment to the table Matilda, although I am not sure that it is particularly effective.

Any thoughts on how to manage this issue and where to go from here would be very very gratefully received.