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

Ooh and another question, nightie or pyjamas which is more practical aftee spine surgery or is it a matter of preference? And what else should I take in hospital with me. All suggestions gratefully received xx

meg, I stayed 48hours. Others have definitely stayed less so worth checking with hospital if it matters. For me nightie but pjs would be fine. The would is quite small and well covered with dressings plus below waist line.

My top packing tips: ( others can add to this)

Own pillows if nhs
Eye mask and ear plugs
iPod or other music/ audio books
Loose change
Pen
Wet wipes and moisturiser
Lip balm
Hair bands
Chargers
Sports drink bottle, you wake with a raging thirst
Own pain killers in case staff are slow ( don't double up, though)
New pants
Slippers and lightweight dressing gown
Trashy magazines

Hope that's helpful.

Thank you, this is exactly what I need

Meg my DP is having a discectomy next month so will probably be on a similar recovery path.

I'm pretty worried about how incapacitated he will be after - but it needs doing. I've seen how incapacitated he has when he has a flare up/doesn't have the right drugs.

Does this group accept those with coccyx injuries. I've injured mine twice falling down the stairs. The most recent time was about 2 years ago but I still struggle to sit on hard floors for any length of time. I also suffer occasional flare ups - which I am now. I have to do a lot of driving next month to get DP to surgery as that is not have happening locally. I probably have 12hrs of driving to do over a few days and long journeys are difficult. I'm popping DPs Naproxen to try and get the inflammation down and hoping it's sorted by then.

I'm just suffering quietly cos I know that this is minimal compared the suffering DP goes through.

Just wanted to pop in and let you all know that I'm slowly on the path to recovery! I've managed to reduce the painkillers so that I'm just taking paracetamol and naproxen now, and I'm up and walking about, albeit slightly slower than usual. Still can't bend forwards but I'm just so glad that it's improved from a couple of weeks ago that I can put up with that.

meg sorry to hear about your diagnosis, but at least once you've had surgery you can start to hopefully recover - keeping everything crossed for you.

keep sorry to hear about your coccyx problems - it sounds really draining I'm sure that you will be in good company on this thread and are sure to get some really useful advice!

Hi furry, great news that you are recovering even if slowly. It does take time. Did you get any physio? That might be very helpful if you are on the mend. Do I recall that you work in a hospital? When I did I was able to access a lot of physio with hardly any wait through Occ Health. ( pretty much all they had on offer, physio and counselling so I took both )

I'm suffering hugely today all down one side from waist to my toes. Really quite grim and unfortunately I have theatre tickets for this evening. At this rate I will be too drugged to follow it but I'm bloody well going. Such a pain to find a simple outing like this so difficult.

Get better fury x

Can I join? Chronic lower back pain (T12-L1) for five years, extending to hips, thighs, knees and shins with numb left foot (mainly left side symptoms). Seen chiropractor and physio but no help, currently taking amitript 20mg and cocodamol 30/500 PRN (QDS at present). Allergic to NSAIDS and tramadol makes me wired so trying to avoid at present. Finally found a GP who is actually not just fobbing me off with more tablets and analgesia and currently awaiting referral to orthopaedics to find route of problem.

I try and just get on with it, which is not often for the best but I can't bare to 'be a bad back' rather than just 'have a bad back'. I just end up dealing with the consequences later. A jumperoo induced pull this time though is the last straw and I need it looking at. I can't manage to play with my own baby and it's not fair.

Hope you somehow manage to enjoy your theatre visit Matilda, and that horrid leg pain reduces despite it.
Fingers crossed for further improvement Furry. Good luck Meg.
Milky hops, sorry you have a bad back too. Have you had an MRI already?

Hi all, I've just found this thread and have read most of it. So sorry to read of everyones troubles, I feel your pain so to speak!!

Anyway I've just recently had the results of my MRI and its not good. I've been given an urgent neurosurgery referral because my prolapsed disc is not only affecting the nerve, giving severe sciatica, but its also spread back and is pressing on my spinal cord.

Has anyone here ever had this, and what is the recovery time after surgery like?

I'm a bit freaked out about it all tbh as I am usually very active and have only had this pain since summer.

yesyes sorry you have such awful pain. I hope your appointment comes soon. If you have a discectomy you can wake up and notice the leg pain has gone immediately so it can be really quick to feel benefit. The recovery takes weeks and weeks and can feel slow but of course it is progressive so although not fully recovered you should be able to work in a sedentary sort of job etc by six weeks or less.

Lots of us have had surgery so feel free to ask if you have questions.

I had a very good pain clinic appointment today. No actual changes to tretament but very affirming and good to have someone who listens intelligently and carefully. Am going back for a session on flare up planning which could be very interesting. I'm so bad at cancelling plans when I should. Will share any new ideas when this happens.

Hope others are coping. Any news for anyone?

Thank you Matilda. Whilst I am worried about having surgery and being incapacitated for so long, I am also excited to be rid of this pain. It really is the worst and I feel so bad reading posts on this thread seeing some people have had it for years!

I think I was quite lucky in that I didn't go to my GP when it got to the worst point. I booked a physio privately thinking I just had a bad back and a bit of massage would fix it. How wrong was I! She's been great and diagnosed it straight away and had my scan booked within 2 weeks. I've had a lot of sessions and traction. Also used Amitriptyline but it didn't work for me, it actually made me depressed.

Just this week she decided that physio was no longer a good option as it wasn't working and costing so much! So I'm hoping to have an appointment with the surgeon soon.

Have you actually had surgery yourself? And if so, how was it for you?

Hi yes as Matilda says lots of us have had surgery (me 8 years ago). The leg pain went away right away and I recovered slowly (I am old) over 3 months and went back to work part-time. I still have a few issues but am 80% fit on a good day. For the young and fit you can do better than that. Great that you had such a good physio and she will be helpful during recovery for sure (if you are UK you get some free physio but its worth paying for more). Keep us posted!

Hi all,

DPs date for discectomy is just over a week away.
I'm just wondering what to expect as far as mobility and recovery is concerned. All he has been told (or asked) is that he will be discharged the day after surgery (all being well) and there will be no lifting for 6 weeks, light duties for 3m. He has all the info on potential complications but nothing useful on what to expect if all goes well.

I've Google and read a few patient info PDFs so have some idea about the official line. I guess I'm just wondering what the reality will be. He is reasonably fit in so far as he can be. He also has a 2-3hr journey home from hospital to deal with.

What can I do to help him?
I've heard that sitting for long periods Could be uncomfortable/ difficult/ painful....he has visions of being at the cinema a week after op (I think he has his head in the sand...).

What pain relief will he need. He has a 6 week supply of his current drug regime (he will be 2hrs away from current GP and gets military prescriptions which are free. In the past he has refused to see local GP cos he is a man and won't pay).

What is his sleep likely to be like. He doesn't sleep well at the best of times. In part due to pain. In part just due to who he is. I know it sounds ridiculously stupid but I don't want to hurt/disturb him when I roll over or move in bed.

Any real life recovery stories would be fab especially any hints or tips that might help.

I would say the immediate concern is actually getting home. Do you have access to a comfortable car? I was always worst sitting upright so had the seat reclined and several pillows. I only had an hour and tbh I slept because they filled me up with oromorph before I left. This was on the third post op day. If travelling further you will need to stop for short breaks along the way and take it easy.

For the first few days I pottered but was up and dressed in the house. After a few more days I was taking short walks with someone with me. This made me very tired and I rested a lot. The staples came out on day 8 which meant no more dressings.

I didn't have a smooth recovery but the advice was to reduce opiods first, then nerve painkillers (which need to be carefully tapered with GP support) and finally anti inflammatories with paracetamol as required.

After my first surgery I was given simple back exercises from the start. I was back in the pool after three weeks and the wound healed.

Can your dh sit now? Lots of disc sufferers can't. If not I suspect the cinema at a week won't be much fun. Just play it by ear. Try to get him to take things steady. He will have some days better than others.

With recovery I think it's better to measure your improvement week by week then month by month rather than by the day. It's easy to be impatient and rush things then set yourself back.

Good luck. Keep us posted.

Ty

Unfortunately I am not bringing him home. I wish I was cos I could fill the car with pillows and duvets despite him saying he won't need them. Work are providing him with transport. God knows how comfy it will be. I wish he'd let me go pick him up....but if work are willing to do it then saving money on the fuel is more important to him. Ho hum.

He's not on any nerve painkillers at the moment. He only takes them when he is having a bad period. He is on naproxen, co-codamol and amytriptaline. Also has periods on tramadol too but not currently.

Did you have to see nursing teams for wound dressing and staple removal. I guess my go surgery will do that even tho he is not registered as a patient here.

With regards to sitting. He is reasonably fine at home on the sofa. Struggles at bit at work with either sitting or standing for long periods so tries to mix it up. I'm sure he'll let the pain guide him but we'll see.

I should just mention the amitriptyine is a nerve med. depending on his dose he will need to taper that off. Probably reducing by 10mg per week would be reasonable. Yes, practice nurse can remove the stitches/ staples. The hospital gave me dressings so I could get a clean one on after showering- you can do this.

Cool.

I knew amytriptaline was for night pain. Didn't realise it was specifically a nerve drug.

I believe he has got a bulk prescription for it which will be enough until he goes back to work in Jan so he can discuss that with his Dr then. Just kind of making sure he isn't likely to need anything extra that won't be sent home with him when he's discharged - notwithstanding the understanding that everyone is different etc.

Hello lovely people.

I've fallen off the thread but I know there's a few of you who might be able to advise?

I was told I have hms, though a lot of my muscle issues were directly related to having issues managing my thyroxine. I became very weak, additional weakness caused by pregnancy appeared to really weaken possibly damage muscles.

My ribs were very painful for a while, chest, spine and so joint. Burning and itching.

I've gradually recovered since upping ferritin and getting thyroxine right, Pilates, some Forrest yoga and physio.

I'm still recovering but still get flares of this very tight feeling around my chest/ ribs/ spine and lower back. It's often a bit prickly and itchy. I'd been putting it down to healing (as of muscles and attachment to bone have had too much strain)

I seem to be getting another flare. My physio says my upper back is stiffening up (given exercises) and my Pilates teacher was really trying to get my spine to move in a curl down last night.

I wake with stiffness particularly in these areas in the morning for some time. It's quite horrid and painful.

I know this could be fucked muscles - I don't get why my arms and hands are not bad, legs feet etc. my core is getting better and I'm clearly very flexible in my hips.

My question: AIBU to ask to check if it could be AS again? ESR was perfect apparently. But NAS says 50% are.

Or could this be hms?

I don't understand why chest and ribs and neck. I would get shoulders.

In many ways the 'cure' is the same but it could explain extra fatigue and flares at times.

Also sometimes might be linked to before a period, but not always.

Second question- those of you who have had issues with your back eg operation or lots of weakness, can the tissues be affected by monthly hormones?

I have booked a GP appt and will ask, but I worry about seeming a hyperchondriac! He ruled it out last time but I don't think the gene test was done nor any scans.

Sorry to add - also seem to get hot and sweaty bit like a temp. But not sure - could be hormones or too much thyroxine (I was quite high).

I have quite a kyphosis unless I concentrate!

cinema after 1 week oh dear! Sitting will be painful at first and gradually built up. 3 months to get back to "normal" but in reality you can be improving for years after. Turning round in bed was hard but I was lucky and we have metal bedstead which I hauled myself round with. Recovery feels very slow but when you think what they have done maybe not so. Yes he is going to regret not going with your pillow option of travel but we all got some things wrong lol.

Hi Clarella ... I can't help (though I do sympathise) but I think anything "extra" like period pain or even a cold can make us feel worse if that helps.

Clarella, I think lots of people do have fluctuations in their symptoms within their menstrual cycle. I guess keeping an eye on things helps you to plan. Could you be peri menopausal? That seems to bring along additional aches, pains and sweats. Of course, thyroid so do the same.

One thing does occur to me is that I do have a very tight thoracic area which my physio/ Pilates teacher is working on. You mention rolling forwards but the backwards flexion is also important. she gets me rolling back over a small Pilates ball and doing stretches to open the area. She says almost all adults are tight here with the exception of electricians who spend a lot of time working with their arms overhead!

You have so many things going on it sounds reasonable to ask for more bloods if you are worried. I guess once your thyroid is optimum and if other bloods are normal it's a question of finding the best people to help you with getting the best you can be.

Hi folks, can I ask a painkiller question?

I have Scoliosis. I had a fusion on a 72 degree curve 25 years ago. However, an MRI 2 years ago showed that the fusion has a bit not properly fused, that I now have a lower curve of 60+ degrees and that I have Degenerative Disc Disease.

The pain in my disc area is unbearable. I have fortnightly acupuncture, a heatpad and daily paracetemol. I can no longer take Ibrufen due to stomach issues. I also have Co-codemol in the cupboard which I take every third night so that I don't build up a tolerance.

Anyway, now to my question. My Dad gave me his Tramadol a couple of weeks ago as he drinks and can't combine the two. I am finding that the Tramadol helps and doesn't make me really tired like the Co-Codemol does. Can I ask the GP to prescribe Tramadol? Do I admit that my Dad gave me his?

Sorry for the essay and many, many thanks if you are able to advise me.

Thank you -