Chronic Lower Back Pain

[14penny]

I have had quite a few neurological problems starting with Hydrocephalus which i had an third ventriculostomy done which cured it, I have since then experienced really horrible lower back pain and have found out I have stenosis in the spine and scoliosis I have seen the pain management team and it seems nothing is helping the pain I have pain patches and pain killers and have had a spinal injection but nothing is helping so my pain doctor has discharged me with only physio to do which i cannot manage through the pain so I was wondering if anyone on here has any suggestion or if they have gone through similar I feel like giving up as I cannot live my life to any enjoyment anymore

14penny

[Madmusiclover]

Sorry I can’t help but they are scratching their heads about what to do about my kneecap problems including excruciating pain when it pops out of alignment. Physio and painkillers only for me being suggested atm. I do understand the pain issue with doing physio. It’s so frustrating. Worth going back to GP? I hope others can help. So sorry for your pain. It’s depressing and debilitating.

[14penny in reply to Madmusiclover]

Thanks for your reply and interesting i had that with both knees for which I had a total kne replacement done on both knees one in 2007 and one in 2013 and they are both going strong and that horrible clicking and pain a thing of the past, just wish I could have the same outcome for my back as I am also numb on both thighs and am hoping it does not spread.

14penny🙂

[Madmusiclover in reply to 14penny]

my knee is basically ok. It’s an issue with my kneecap. Everything crossed for you. X

[lolacat]

is there an operative option? That would fall into the domain of an orthopaedic consultant rather than pain management so perhaps see if you can get a referral. I've a different spinal problem and although the NHS can be reluctant to operate (NICE guidelines- consultants themselves can take a different view) I'm finally on a (very long) waiting list for an op.

[14penny in reply to lolacat]

Thanks for reply I think I am going to keep pushing for 2nd opinions, good luck

[Downtime]

I dont have stenosis but my lower back is very painful as arthritis in the facet joints means bony growths ars pressing on nerves . I’ve had steroid injections which were useless and I’ve now been offered nerve re-nervation or ablation which burns off the nerve endings and stops the pain.

This might work for spinal stenosis too. Also surgery is an option although probably a long wait unless private. I think they should have discussed these things with you,

[14penny in reply to Downtime]

Thanks for your interesting reply especially about the nerve endings which i think is the main peoblem no one has discussed this with me as I think you get to a certain age and they dont bother, Good Luck

[daughter-Advocate in reply to Downtime]

Have you had the nerve re-nerbation or ablation?

[Downtime in reply to daughter-Advocate]

Not yet as there’s a bit of a wait. I understand that it much improves pain in :most cases.

[oldtimer2]

The treatment for back pain from stenosis seems to be poorly researched and funded. I've spent a lot of time looking at the medical literature. I've got stenosis of the lower spine and problems with impingment of the sciatic nerve (and a few other nerves). I had one epidural injection which helped some of the pain for a while but didn't last and now I'm on an anticoagulant (apixaban) so I can't have any more.

The risks of paralysis after an operation to remove part of the spine and insert a prosthetic support instead are such that I don't want to risk that unless some of the nerves are so badly affected that I have no other option. The spinal surgeon says he'll do that as an emergency if necessary.

I find that it is very important to keep moving. If I sit or lie for any length of time the pain is much worse, although it is often difficult to motivate myself to move. I am managing with codeine and paracetamol and would prefer to stick with these as I don't get much in the way of side effects from this. I've had several other pain reief medications and not got on with them, mainly because of not being able to think clearly. As I give frequent talks to the public I need to be alert, although I now do them sitting down!

Fortunately my Rheumatoid Disease is behaving itself on Adalumimab, and I do notice that the back pain is slightly less in the first ten days or so after having the injection, suggesting some inflammation in the sacro-iliac area too.

I'd be very interested in any suggestions you have about management as a result!

[14penny in reply to oldtimer2]

Thanks for your reply it was an interesting read, and the trouble I am having with my pain clinic is he has done a nerve block injection but it only lasted for 4 days and when I went back to him he said he was discharging me as there was nothing much to be done as the doctor i saw at Guys said the spine was not that bad but they dont realise the pain it causes as when I go out I have to sit down about every 5 minutes or so , but I think I will have to try and get some other help back from my GP. Thanks and Good Luck

[strongmouse]

It is worth noting that some physiotherapy exercises can initially cause pain. When I was given physio exercises for spine pain (lower back disc pressing on spine causing back pain and pain down thigh), the physio told me they were to help strengthen the muscles surrounding the spine. He told me not to do the exercises which were causing excerbation of pain and to build up slowly. It took about 8 - 12 weeks to help.

Alongside physio I have pain medication - co-codamol and nortyptaline (low dose). Some people find antiinflammatory meds help.

Have you had an MRI for the stenosis? I have cervical stenosis caused by osteophytes (outgrowths of bone) which press on the spinal nerve. I am careful how I move my neck as the pain can flare and take a while then to settle down. If it is causing other problems such as tingling or pain down limbs or extremities, then they should check. I was told what symptoms to watch for in case it got worse. Gentle exerices helps to stop the muscles tightening up which can make the pain worse.

Managing pain, as you will have discovered from the Pain Clinic, is about using a range of tools. Knowing what is causing the pain helps, but with chronic pain it can become more diffuse. Getting the right medication makes a huge difference. Pain medication works in different ways. It can take a while to find the ones that work for you.

Pain is horrible. If your symptoms are getting worse then go back to the GP. Feeling depressed or stressed both can aggravate pain, so it then becomes cyclical. Is the pain there all the time or does it come and go or get worse at times? It might be worth noting when it is at its worse and when it is better, and any activity you did around that time. For instance I've noticed how much tighter my muscles become when I sit for any length of time. A mixture of resting lying down and gentle activity helps when it the pain flares. Finding things I enjoy doing, which are very different than when I was younger and healthier, help too.

Knee operations can be painful (my husband has had both done) and take time to recover from so well done for getting through that! I do hope you find some respite and the pain lessens. Don't give up.

[14penny in reply to strongmouse]

Thank you so much for your very informative reply, and I have had an MRI which showed scoliosis and stenosis I had the chance to have it done at 2 different hospitals and the strange thing is one hospital sai i did not have stenosis but the other said i did??? I am going to go back to GP to discuss this as I feel I am getting nowhere so it is so good to talk on this site. All anyone wants is to be pain free so I will keep on trying .Thank You again and Good Luck

[oldtimer]

I find that keeping the pain under control is best policy for me. I don't aim to have no pain just that it should not prevent me doing things. I have bought a substantial walking frame with adjustable handles as some days I walk better being pushed up and some days better more bent forward. I can still touch my toes and that helps to relieve the pain as it opens up the gap for the nerves. I'd suggest looking for solutions that you can adapt for your individual circumstances. Best of luck!

[14penny in reply to oldtimer]

Thanks for reply and it is the pain that stops exercises and I am trying to keep moving without any aids at the moment but i must say when i go Nordic walking it does help a lot but you cannot really walk around shops with them or the high street. Best of Luck as well|

[Angels54]

Hi , I ended up with 7 fractures in my spine 4 years ago , also have RA , Osteoarthritis, several other things , only saw consultant after 3 years , can’t do anything now , my pain has been unbearable, I am on biological injection, pain killers , cold pack on my back , I now have a curve in my spine , saw physio didn’t help , I’m getting about a bit better but can’t walk far , I’m going to try hydro pool , I have taken CBD which has helped , I found it difficult to cope with muscle spasms, sad to say that I have had to do everything for myself, keep going 👍

[14penny in reply to Angels54]

I do hope you get some relief from the hydro pool it sounds good xx

[CharlyK]

I was suffering from chronic lower back pain since I am about 14 years old. The older I got, the more other symptoms I had. Sometimes knee pain, sometimes foot pain, TMJ, headaches, pelvic floor issues. I was in PT on and off and on medication on and off. Nothing really helped. Then I got introduced to a method called postural restoration. At first, my pain got way worse but then, I slowly started to have progress. Now I am not fully pain free but 6 out of 7 days, I can have a fully normal day. There is a specialized institute in the US for it but there are also other practitioners around the globe. Try to find someone locally or online.