Hi,I have a history of l5/s1 joint degeneration and bulging disc touching not compressing the nerve since 2017.
Over the years the consultant has given me various injections, tablets etc and I have to tailor my life in order to deal with pain flare ups. Since 2020 suffering from joint pain and have had facet joint injections in l5/s1. However in Oct 2023 I had a massive flare up and back went into spasms and I am still struggling now and not back in work full time doing reduced hours due to pain sitting and standing. I had an mri first since 2017 which showed an improvement in the disc since this scan but some facet joint degeneration further up l4/5.
I feel like I am going backwards a bit whilst there is some improvement I have also suffered with knee pain, hip pain when sleeping and now more recently I have upper back/under shoulder pain which I have never experienced before which may tie in with some inactivity or knock on effects from it all I am also menopausal and the physio seems to think a lot is tied in. Because I am so fed up I have booked in to see the spinal consultant next week. I would welcome any thoughts on how to handle this and questions to ask. Over the years felt a bit fobbed off if I am honest. I now have to see a private physio on average every 2 weeks to keep going.
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I have had two ops last year for stenosis and a disc in the lumbar vertebrae. About 4 weeks after the second op my lower back pain returned and x-rays showed facet joint arthritis L5 - S 1 L5-L4 and L4-L3. I saw a pain consultant who suggested on injection of steroid and local anaesthetic into the 6 facet joints affected. This was done at the end of Jan and I have been pain free since. I have managed to come off all painkillers over the last week and although I have to be careful what I do it is just great to have virtually no pain for the first time in 18 months. I am due to see the consultant in 2 weeks time with a view to having the nerve endings in these 6 joints destroyed to give what I hope will be almost permanent relief.
Fortunately , unlike you, my pain has always been only in the lumbar region. Life can be very difficult with chronic pain , but in my case I can see some light at the end of the tunnel.
I wish you well an d hope that you will find a solution. Denervation of the affected joints might help if you found the injection helped at all.
Ah thank you and glad you have had some pain relief. Yes I did find some relief from the previous injections but I may look into denervation. I hope all goes OK with the consultant.
Hi, was interested in your reply. I have spondylolisthesis . I had an MRI , my GP did not explain the results very well in fact told me I had some wear and tear in my back. I have managed to read the report for myself. Unfortunately do not understand most of it. So made appt with the doc but not until March . Have appt with physio tomorrow, self referral. So hoping he can explain it. The thing is have terrible pain in right leg, to the effect that I can hardly walk. Cocodamol are doing nothing. So I know that steroid injections can help according to the NHS site. So, just wondering if you were referred to the pain consultant. I also have some pain in lower back but nothing like my leg which is unbearable at times. Was just interested that the steroid injection helped you. I hope AMS_1 will get the pain relief , it is so depressing not to be able to get out and about.
I found little relief with Cocodamol and found Etoricoxib 60mg helped. When referred to the pain specialist , she immediately increased theEtoricoxib to 90mg plus Duloxetin 30mg and a Buprenorphine 5mcg transdermal patch. This improved thing dramatically. After the injections I gradually weaned myself off the drugs and am now hoping for long term relief with the ablation of the nerve endings.
I got sciatic pain before the stenosis was corrected by a hemi laminectomy. I was lucky in that having just down sized my house, I had enough money to go privately, which meant not having to wait. I feel so sorry for those people having to wait for months on the NHS.
Originally I had an injection of local and cortisone before going for surgery, but found the relief was only very temporary. I am glad that you have an appointment with your GP to explain the results. I would also ask for a copy of the scan and report . I guess I am lucky in having spent my working life as a vet, so have some idea about what is going on. I also took a physio friend with me so I could be sure I didn't forget to ask something important!
Thank you for your reply. While I am conscious that this is AMS_1 ‘s post it is great to hear about someone who has some interesting information. I presume you are in the UK. I have the report of my MRI but do not understand most of it. I have not even heard of the medication you were taking. I presume your pain consultant was also private. My GP does not seem too interested , even though the pain and ability to walk is getting worse. Hopefully the physio tomorrow will help though it is just telephone consultation to start with. It also mentions stenosis on my report.? Everything on the left side though it is my right leg that is the problem.
Yes I do live in the UK. Unfortunately a lot of GPs do not understand the amount of pain we are in. If you can get a referral to a pain consultant it would be the route to go.
There is a saying that new symptoms should always be investigated. You are a women and menopausal, so there is a much higher chance that you will develop an autoimmune condition. Rheumatologists are the experts in that area, not spinal consultants.
Many clinicians suffer from confirmation bias (Confirmation bias is the tendency to search for, interpret, favor, and recall information in a way that confirms or supports one's prior beliefs or values.) so if a spinal consultant thinks the problem is spinal with injections or surgery the best thing to do, that is what will happen. But the fact that you say you now have pain in other places, this should be investigated separately. It could be that you now have an autoimmune condition as well. After all, Hickam's Dictum states that patients can have as many diseases as they damn well please!
So one of your questions could be what else could be causing this. And don't accept fibromyalgia on the first visit, that is the lazy diagnosis. Yes, the pain may all be related to the spinal problems, but as Kemptvill has said, their spinal problems haven't spread to their shoulders.
Very helpful comment, cyberbarn. I would point out though, that there is a well-established connection between shoulder/arm/shoulder blade/upper back pain and issues in the cervical spine, even without neck pain. Shoulder conditions are also related to endocrine disorders, e.g., diabetes and thyroid. That speaks to your point that people are complex and should be considered accordingly.
Thank you and all very good points. I think because of all the issues I have had with my lower back I just think what else. But other things do crop up. My physio is keen to say my knee issues are as a result of over compensating for my pain. The menopause causes joint pains etc and it may all be linked but worth investigating. Thank you for responding.
hi AMS 1, I have been dealing with lower back pain caused by facets disease for many years. After I went through the process of killing the nerves around my facets my pain doctor had me get physical therapy because of my inactive lifestyle due to chronic pain. I’m not going to lie to you it was not fun. After a year or so I started getting better. I got off opioids and started CBD oil which helped take the edge off the pain. Once I got stronger I got back control of my life. I decided I had pain it didn’t have me. If I wear a brace when I’m doing something heavy I can get through it without hurting myself I am okay the next day.
Every health issue I have I learned how to deal with the symptoms one at a time and over come as many by sheer focus and determination as possible. Other wise things overwhelm me! God made the human body with amazing capabilities and He can fix His creations!
Thank you I am glad things have been a but better for you. I know how you feel I have had this for over 10 years and my life has totally changed. I try to stay upbeat and take one day at a time but sometimes it does overwhelm me. I am interested in killing the nerves and funny enough my husband has just bought me some cbd oil bit wary as it contains low legal levels of thc. Thank you again sad to think so many of us dealing with chronic pain. I do appreciate the small things in life which may sound cheesy.
I am sorry to hear you are going through so much at an early age. Just wanted to say sorry to seem to have taken over asking Kemptville some questions. It is that her problems have some connection to mine. How did you book a spine specialist. Is that private or did your GP refer you. Getting no joy from mine. I hope you find some answers. Good luck.
Hi, when I read your post it was like reading my own history. I have had this since 2015 - several rounds of facet joint injections which only gave short term relief and not pleasant to have - was told by Prof that they would not do denervation as I was too fat - the referred pain travels down both legs - feels like a corkscrew through my hips and so sensitive it is crazy! I was on mega amounts of meds that really wasn't helping the pain and instead making me sleepy and zombified! So I came off them - with GPs help. I now take my inspiration from the "Flippin' Pain" campaign - use distraction therapy (work, music, cats!) to divert my brain from thinking about the pain. Please have a look and see. It is not easy by any means, the pain is still there, just as bad as it was when on all the drugs so what was the point of the drugs - they are for acute pain not chronic constant pain. I have had mega amounts off work due to mental issues, depression and anxiety, doesn't help being off. My journey continues...
Thank you for responding and sorry to hear what you are going through also. Yes I have had all sorts of meds and like you have come off them in time for various reasons. I have had a lot of time off since last Oct and still not back full time and likely will ask to reduce my hours. I work a desk based job so can't see me sitting as I once did all day. I am also lucky at the moment to work from home but that will change shortly and will be back most of the week.
Thanks for the campaign details will have a look. I love cats too and find them a great comfort. I also went back to work just to distract myself even if it was for a few.hours.
Wishing you all the best. Just wish we were taken seriously. I have a consultant appt this week so wish me luck x
Working from home is a godsend - I can recline, lie on the floor and best of all... the cats are around. I have 5 furballs that keep my day busy, in and out in and out LOL!! muddy paws...wouldn't have it any other way - especially when Darcy comes and sits on my hip if I am on my side, it is as if she knows I am in pain, her being there diverts my thoughts of pain to thoughts of giving her a big cuddle.
Like many chronic pain sufferers, I have researched the net, there is just something about the Flippin Pain campaign that I got - not the cycling side as they seem to big on it, but watch their webinars, pain thoughts and pain gates all just clicked with me.
Hope your consultant appt goes well, I dont want to preach to those who know but one thing I do know now is that you have to be very proactive with what you want. Go into that appt with a list of questions and queries written down. Ask about local pain management clinics/groups/forums and also if there is a specialist chronic pain physio in your area. Mine was amazing - pin pointed pain points, gave me gentle exercises that I could cope with - completed a 12 week Active with Pain course with other sufferers over Teams was fantastic and not pushy at all but intro to gentle stretches.
Another piece of advice and is very hard to achieve these days, is to see the same GP, dont need to waste precious time going over past history with others, takes a bit of planning and being proactive to what you want and need.
Ah thank you for all the advice all noted and very helpful x my one cat has been by my side through all of this and helps on those dark days. The other cat not so much only really wants me to feed him lol!
Hi AMS. I too am very similar age to you, in UK and also menopausal. Also had back issues L5/S1 for 10 years+ and also diagnosed as degenerative/arthritis. Have had several guided steroid injections over the years and, most recently, the denervation procedure. Have also tried many pain medications which either gave me stomach issues or made me too drowsy to work! Nothing has helped me unfortunately, but lucky to be allowed to continue to work from home for the time being as there is just no way I would manage the commute. Was then referred to NHS pain management by neuro-consultant and have so far had two long conversations, with some physio planned in near future. Those 2 conversations have made more sense than anything else over the years - a real eye opener. I now understand that injections and denervation, and ofcourse the painkillers, are masking the issue rather than mending it/helping it. I understand that any of those treatments might be of help to some, but for me, the way ahead is to stick rigidly to whichever physio exercises I'm given, lose weight and try and get moving again. That would seem to agree with what many contributers on similar posts on here, who have made roads to improvement would say. Chronic pain is so debillitating and I dont think it can ever really be understood by those not suffering. I wish you well in whatever course of action you decide. Keep us updated please. Its good to share our experiences.
Thank you very similar story. I really appreciate your advice and sad to think there are so many of us in this situation but comforting to share our journey. Yes the last consultant dismissed the pain clinic for some reason but that sounds good. The physio does help and I find walking works for me too when I can. I will keep you posted on how it goes. X
I am a forum moderator at Pain Concern and have just been reading your post.
You have had lots of great replies. I have included a link below to a Self-Management Navigator Tool that has been designed specifically to help navigate health care appointments.
Hi, I went to see the consultant who basically said the disc bulge is there but much improvement since 2017 and the last scan. However I do have some residual nerve pain as a result which may be causing some irritation and disc degeneration. But he thinks the pain is coming from the facet joint. Options are carry on with conservative treatment but it's been months. More injections 4 this time l5/s1 l4/l5 had l5/s1 which helped for a bit but temp. Another option is nerve abalation I asked about success rates and it was "no guarantees but worth a go". Surgery out for now joint fusion nhs guidelines.All very short term to get on top of the pain which is great and what I need but no fixes. Will have a think but keep going to physio and also look at the menopause side also as my physio suggests. Has anyone found nerve abalation to be helpful?
Unfortunately since the appt I now also have to go to see a urologist. Bascially before Christmas I had to stop naproxen I thought I had uti but they found blood in my urine. Re tested and again found it. Blood test low in ferretin so now a quick referral just to check nothing nasty. I did ask if this could be linked to my recent pain lower back pain kidney stones etc physio doesn't think so.
Not so much worried about what they may find until confirmed it's another thing to think about and mentally and physically prepare for.
Feeling very sorry for myself and next week will be applying to reduce my hours officially and carry on working from home for a bit longer. Always worked full time so a change for me but needed.
The realisation is hitting me again that I just have to manage this as best as I can. I have done for 10 years. There are no solutions.
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