Hello,
Is there anyone here with lower lumbar stenosis with severe chronic pain?
I’m having a nightmare trying to convey the pain I’m in with what the docs are seeing on my MRI. I wondered if anyone knew of a good doctor who could be contacted for consult..
I've just been diagnosed with lumbar stenosis & from L5 to L1 have gone & I hear your pain & what your going through. Im still waiting on a neurosurgeon for neck nevermind the lumbar region. So cannot recommend a doctor of sorts.
hey Angelicscripts6!,
I’m sorry to hear about your diagnosis and I hope the neurosurgeon has some good news soon!
Hi. I'm not from your area but I have severe stenosis of my lower spine. I have gotten ablation done for it and that helped for about 8 months. I recently had it done again but it didn't help as much and got two shots, one on each side and that has really helped unless I do something stupid and pick up something way to heavy. (One day I'll learn). I really don't want to do surgery as I'm 74 and not interested in any more surgery on this old body unless absolutely necessary. Sometimes I'll get some breakthrough pain and I will use medical marijuana which is legal here in the states and that really helps with the pain. Wishing you good luck and hope things get better for you.
I use CBD oil and hemp rub. It takes the edge off for me.My GP said if he was allowed to prescibe it he would!
I'm just waiting for my latest appointment to see my consultant.
Good luck to all.
Hi Nodmeister,
Yes I’ve tried all kinds of CBD, unfortunately didn’t even take the edge for me. I ended up going down the THC route which, did help, but I wasn’t keen on being high, so I stopped. Good luck to you too!
Hey Carsok, you and I sound a lot alike. I've been seeing a pain doctor for 2 years and saw her yesterday. I started out getting the steroid injections from her then a few months back went through the radio frequency abalation. I'm 70 and like to do all my own projects around the house so I too lift things and do a lot of activity that aggravates everything. She prescribed 5 mg Hydrocodone from the start. I take one pill in the morning to get through the initial task of trying to loosen up then I'm good for the day.
Hey LL, we do sound alike. This getting old is not for the weak. I also take methotrexate injections for my psoriatic arthritis once a week. They help my joints move...lol. I've already made arrangements (morbid) to donate my body for research. I have so many things wrong..brain tumor (inoperable), aortic aneurysm, Bochdalek hernia (my liver going into my diaghragm) that was operated on and failed, and two ureters in my kidney. I almost want to stop going to doctors as who knows what else they'll find. I just keep chugging along. I have a small business at home that I make birdhouses and sell them and it keeps me busy and out of trouble. Take care and hope things start feeling better.
I can understand your pain, my back problems started 5 years ago, I have severe lumber stenosis, which caused the dreadful pain down my right leg, I waited a year before seeing the pain clinic, physio was started and they prescribed Duluxetine, I wasn’t keen to take after reading up about them, I have long term rheumatoid arthritis and osteoporosis also, so am on pain relief anyway for them, Naproxen and low dose steroids and other medications. I ended up taking Gabapentin, this was almost a miracle as the pain was so much less, mainly the leg pain. I had an MRI and this showed many problems, with colapsed vertebra, twisted spine among them, I was referred to a neurosurgeon he said I could have an operation to bolt the spine, I waited just so long and eventually the op was agreed, then Covid started so all was stopped, I got my GP to refer me to the Royal Orthopaedic hospital, again I waited a long time to be seen, they decided I needed my spine to be straightened, I had to have a special CT scan on my bones due to see if I was suited for this surgery. Eventually I was told I wasn’t able to have any op and my pain was to be managed, they referred me back to my local hospital for this. I was seen and had steroid injection this was unsuccessful so I am to have rehabilitation course Next Easter ! I am a lot older than you, I did swap to pregabalin and can just about deal with the constant pain, have you tried any of the nerve pain medication, I can’t tolerate any opiate based meds any way.
Hi Gigi71,
Wow what a journey!
What’s the rehabilitation course you mentioned? I’m interested to hear more if possible..
Yes I’ve been on all kinds of meds. Pregablin, naproxen, tramadol - none work. It doesn’t even get the pain down to functional tolerance. The only thing that’s worked has been oramorph, which I managed to get hold of about 10 years ago, literally the only thing that stopped the pain dead in it’s tracked and that I could live a really good life with, but doctors withdrew it.
I’m currently on 50mg of tramadol, 100mg paracetamol and 10mg of amitriptyline, but so far the pain hasn’t been touched. Disheartening really.
I really feel for you, some days I could scream. Due to the problems with my back I find walking very difficult, I have a very active mind so get frustrated with it all. Due to long term health problems I have learnt to breath properly and practice my yoga and to get on with it, not easy always. The rehabilitation is about managing your pain with CBT gentle exercise and talks from professionals it’s for 4 weeks 3 times a week. I was referred in August and Easter is the first available date. I have a booklet to explain how it works, the new thinking is to get people off strong drugs as the mind doesn’t switch off when they believe the initial injury is healed. We shall see, I will give anything a go.
that’s really interesting. I do a lot of meditating, have done for a number of years now but nothing I’m doing with that is helping my condition/pain.
For some reason the last 4-6 weeks have been unbearable pain, I was not too bad during the summer and last winter not this bad. All of a sudden I can hardly walk or do anything and completely crippled with pain.
Have contemplated yoga but I was always told not to with my condition as it can make it worse .. so I’m confused. It’s helping you?
I go to chair yoga, you can also find it online, couldn’t do the more traditional yoga anyway. I bought an online book for tapping, it’s meant to help with pain. I recently had my kitchen refitted so with all that going on, I haven’t got round to trying it yet. I have always been proactive with my health, but the state of the NHS now doesn’t really meet our needs. I had nine months of terrible pain in the beginning, everything was so slow, I feel I have to try alternative methods to at least keep the level of pain I can deal with. I would like to try the Alexandra technique, very expensive round here though. I was told never to go to a chiropractor my back is in such a state. It’s important to keep moving. I find heat helps me, I use heat pads. I do hope you can find something that works for you.
thank you so much for replying - I really appreciate it 
My husband has had this type of pain for years. You may want to try gabapentin for nerve pain, non sterodal (NSAIDs) worked for him for a long time. If you have a healthly heart (no BP meds) some people have good results with Mobic. Trying to manage the pain without surgery as long as you can. Perhaps a epidural injections, ice really helps my husband with nerve pain. You may also benefit from acupuncture.
Hi Sydney75,
Thanks for that. Gabapentin doesn’t work for me unfortunately, neither does ice. I have spoken to my pain team about injections though and it fell on deaf ears at the moment.
Acupuncture helped but was very very short term relief. I’ll search Mobic though as I’ve not heard of that!
Being a chronic kidney disease patient, I want to warn you against too many NSAID drugs such as Naproxen. Too much for too long will damage your kidneys. They will mostly recover when you stop taking it but maybe not all the way back to where they should be. Just an FYI.
Thank you for your concern, I have 3 monthly blood tests to make sure all is ok and have done for many years. I take lansoprazole and always eat beforehand, unfortunately with any medication you have to weigh up the pros and cons. I also take a Dmard plus a biological injection, so am monitored very carefully by my rheumatologist and the GP. I’m sorry to hear you have been affected by drugs and do hope you are as well as possible. X
I took Gabapentin for the nerve pain in my chest after surgery and had no problem with it and it helped. That was in 2017 and fast forward to 2 months ago and they gave it to me for for nerve pain but couldn't take it as it affected me and I felt drunk. I also have severe stenosis but the shots due help me and if it gets too bad I have medical marijuana, which I know they don't have where you are.
Ahh, medical marijuana.. If only we had the option here in the UK. I've heard good things.
You have to start on a low dose and work up to a level that helps with the pain, one thing is for sure we are all individual in how we react to meds, my sister was given it many years ago and just couldn’t get on with it, made her feel very woozy. I simply can’t take any opiate type drugs, they make me feel sick, dizzy and completely unwell, as well as blocking up the ‘system’ I can’t take hemp either, so sure it would be the case with medical Marijuana, so haven’t tried to sort it out to try. X
Hi there. I have had a long pain journey with the L5/S1 hassle. It started of with a bad lower back and I went to a musculoskeletal specialist. After a few sessions he gave me a lower spine injection which helped for a short while. It got worse again and I took to laying on the floor for short periods. One day I could not got up which was really scary. Managed it after a while with help, and went to bed, luckily I was upstairs. The specialist sent me for a scan which showed a massive bulge. Long story short, saw a neuro surgeon after a failed guided spinal injection who noticed slow onset caudal equine. Had an op 6 days later. (microdiscectomy) Unfortunately it had to be repeated twice more. I thought that was it but voila it went again, this time the surgeon decided it had to be fused. This was just over 2 years ago and it has been so much better since. At the same time as the fusion. He did a laminectomy a bit higher up. This part keeps on playing up but I don't want any more ops and keep on walking an hour every day and practice Alexander technique. My surgeon was good but it does depend on where you live I would have thought on whether or not you could ask for him, as a long journey is murder when you are in a lot of lower back pain. (I remember the first MRI I had to go to was a murderous trip and that was just over half an hour).
Hi Emma,
Strangely enough I never used to get too much pain when driving. I would get out after a 2-5hr drive and just have a stretch but the last 6 weeks just driving for 20 mins is so painful that it starting to become dangerous.
Problem with my scans (apparently) is that it shows the stenosis, the degenerative discs etc but it’s not “showing” why I’m in so much pain. Everyone I’ve spoken to so far can’t understand why I’m in so much pain, and so at the moment surgery is off the table and I’m being thrown from pillar to post to physio and pain team.
That must be so frustrating. It's as if you first must be at risk like I was before they will do anything. Try Alexander technique and I found that a deep tissue massage helped somewhat too as all the muscles around the badly behaved disc go into a sort of spasm. I asked my surgeon if it was OK and he said yes. But do check if it is OK in your case. The one thing I did stay well away from was a Chiropractor as they really did not help in this case.I found the musculoskeletal specialist very good too, luckily we had one of the best in the country live just down the road from us. It was him who referred me onwards.
Hope you get it sorted soon, I know the pain you are in.
yes! Exactly that. I asked the A&E doc last week how bad do I have to be before someone will actually properly look at me, and he said “when you can’t control going to the toilet and/or your legs give way”.
I mean that’s pretty crazy though, right?!
Alexander technique; I’ve heard a lot about this as I’m a drummer for my job but I’ve never really looked into it properly so I’ll definitely have a go at that. Thank you!
Who was your musculoskeletal specialist if your don’t mind? I’d like to look him up if possible.
just thought I would add my brother in law suffers the same as you, there isn’t any surgical intervention that would help him either and has been told to watch out for CE as well. He has recently undergone an ankle replacement and the recovery with at first a cast, then a boot, has taken its toll on his back, somehow you just can’t win. X
Hi, his name is Martin Speight. Sorry not been for a while. Any more info I can send via PM
Hi Berto, Cauda Equina Syndrome, sorry should have put the full name. X
thanks Gigi, I’ll look it up
blimey I hope your brother in laws condition doesn’t progress that far 🥺
it’s the worst case scenario, I have been warned too. X
ncbi.nlm.nih.gov/pmc/articl...
MRIs can show your doctor a good look, but as an example my husband has terrible radiating leg pain (had L5/S1) fusion, MRIs show central canal is open, likely formanal causing radiating pain. He had a transforaminal epidural injection at L4 he actually screamed when they hit the nerve and he has a high pain tolerance. MD quickly added more lidocaine to steriod and showed me the picture with the thin catheter at the L4 foramina it is completely closed (hence) the pain and pressure on nerve. He does not really want surgery again, we can try another shot, or the RACZ procedure which removes the scar tissue. Sometimes a skilled MD can used epidural injections as a diagnostic tool to determine source of pain better than an MRI. Intracept is the procedure that is pretty non invasive for chronic low back pain. Below is an article on what this procedure is, pretty good success rate best outcomes for folks who have not had surgery yet.
ncbi.nlm.nih.gov/pmc/articl...
Good Luck
thanks Sydney!
hi there. I have lumber spinal stenosis L4/5 Iv been suffering since 2006, which back then the pain wasn't as bad as it is now. Iv lost count on the number of MRI scans, nerve conductive tests and still no help from the QE Hospital. Doctor gave me Co codamol, Naproxen, Gabapentin. The pain is so bad still, I can not walk very far at all now maybe 10meters then the severe pain starts in my lower back and down my both legs, with pins and needles, iv recently had to have a Complete new hip, doctors said the groin pain was associated with the back, I had another MRI which turned out it was my hip collapsing . I read that if spinal stenosis isn't treated that it can cause problems with your hips.
So please mention any groin or knee pain you may suffer with, you tell them you want MRI on hips.
I am fed up of being in this pain 24/7 it's ruining my life, I can't even take my granddaughters to the park because of unable to walk. I get told it's to dangerous to operate ( really) . I hope you can get the help you need, I'm still waiting for another appointment from QE, about my stenosis 🙄 . Good luck and stay strone
Morning JEWJEW, really appreciate your comment.
Really sorry to hear about your hip. Surgery seems to be a touchy subject with the numerous consults I’ve spoken to.
I’m not eligible for surgery, and have just been rejected for a spinal cord stimulator. There are days where the pain is so severe that I can’t walk, or even roll over in bed. The pain is constant and radiates. So far the only solution is drugs and physio, both of which I’ve done in the passed and it hasn’t helped.
The biggest problem for me, is everyone talks about how young I am compared to how old my back condition is (I’m 38, with a 90 year old back my pain consultant and nuero said), but apparently that’s fairly standard 🤷🏼♂️
With that in mind, thinking about the next 20/30 years …..
I’ve got two young children myself and trying to do simple things like taking them to the park, play with them, getting them dressed etc is really difficult and when the pain is so agonising that I can’t move and have to dose up on tramadol.. I’m essentially useless.
I’ve had some really good comments here pointing me towards some books to read and people to check out so I’ll have a go and see what happens.
Wishing you well on your own pain and recovery journey 💕
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