Spinal Stinosis pain: I was diagnosed with... - Pain Concern

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Spinal Stinosis pain

Mistygreyhound profile image
35 Replies

I was diagnosed with this a couple of years ago now,aged 67,but this latest flare up is the worst its ever been,and for so long,unable to walk more than a few hundred yards and standing for more than 5-10 mins,with out being in agony in my leg and back,I have not had a MRI yet but need to know how bad it is,my physio and doctor mentioned sending me soon,god knows how long i will have to wait for that as NHS is in a mess,my question is can any pain relief help?as I haven't found anything I can take yet that hasn't given me tummy problems,naproxin,codiene also co codomol I have tried, amitriptyline made me feel like a zombie.

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Mistygreyhound
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35 Replies
Defenders profile image
Defenders

Hi, unfortunately, any real kind of pain control makes you feel zombie like, until you get used to it, and it’s on prescription only. I’m on Gabapentin 300mg 3 times a day but 600 mg at night. I’m in uK and we only seem to get the cheapest generic version of any drug on the NHS! I feel like a zombie most of the time and have to find a time when I feel I can drive safely. The battery on my car always needs jump starting because I don’t drive often or far, I can’t do that and my garage getting fed up of coming out to do it. What I’m telling you isn’t of much help but it’s the truth. Take care. Isobel x

Scotsman53 profile image
Scotsman53 in reply toDefenders

I was in the same situation until I got a solar battery charger, it just keeps the battery topped and made all the difference.

Defenders profile image
Defenders in reply toScotsman53

I have a solar trickle charger fitted! Makes me think there is a ‘car problem’ behind it. I’m going to speak to my garage after lunch to check whether they have fitted a compatible new battery. My car is a DS4 cross back HDI blue, which means it cleans its own diesel (only £20 a year duty). I’ll let you know result.

Mistygreyhound profile image
Mistygreyhound in reply toDefenders

Thanks for taking the time to reply,looks like you are in a worse predicament than me,take care xx

Defenders profile image
Defenders in reply toMistygreyhound

My garage are on the job getting a battery, I found, which is compatible. Expensive but at least it should work 🤞.

Necron01 profile image
Necron01

I was on OxyContin for about 3 years which did make the pain bearable but my Doctor took me off of them as ,his words they shorten your life 😳 I then tried gabapentin which didn’t help so now I am on pregabalin along with Co codomol and naproxen seems to be bearable again

pink123floyd profile image
pink123floyd

Hi i too am on Gabapentin but found taking soluble paracetamol helps with the pain as it gets into the system quicker than tablet form so the two together seems to lower the pain in the back and legs ,as i am recovering from breaking me left leg in two places. I also have spinal stinosis and spondelitus with trapped nerve in my neck causing pain swelling and tingling in my hands making them sometimes useless

in reply topink123floyd

Can I ask what paracetamol is and how it controls pain?

pink123floyd profile image
pink123floyd in reply to

Hi birdsfly the paracetamol are disolvable ones they get into the system a lot quicker than the normal ones you can buy my chemist or most asda stores sell them sry for late reply .Take care .xx

in reply topink123floyd

Thank you

cyberbarn profile image
cyberbarn

I haven't got spinal stenosis that I know of, but I do have spondylolisthesis and had a really bad flare where I couldn't even walk to the kitchen without extreme pain. It was during lockdown so I couldn't see anyone, so we will never know what caused it.

Like you I can't take most painkillers other than paracetamol which I was already taking. My GP got me to try tramadol but I only took it for a few days.

The main thing was hot water bottles. Three of them. One for my back, one for my hip and one for my upper thigh. I had them as hot as possible.

Basically it tricks the brain into thinking that there is no acute pain, only heat. I wore a pair of dungarees which meant I could stuff a hottie down them for when I had to get up and walk around!

Something that is worth remembering about some of the drugs used to control pain is that they don't work for everyone. There is something called the Number Needed to Treat (NNT). It varies for different drugs. It is the number of people that need to take the drug before one person has benefit. So the NNT for amitriptyline is 2.2, for gabapentin it is 6-8.

The other side of it is Number Needed to Harm. For example for gabapentin side effects it is between 8-21 depending on which side effect they are looking at.

Now, none of this is helpful for individual people as this is calculated on population wide statistics, but it does explain why for some people a drug is fine, and for others like us we struggle to find anything that works where the side effects don't out weight the benefits!

I hope the pain eases. My private physio told me to rest more for a while to give the body time to heal. Easier said than done of course!

Mistygreyhound profile image
Mistygreyhound in reply tocyberbarn

I use a hot water bottle too when the pain gets so bad,I think it helps a little and a hot bath

Didgeydo profile image
Didgeydo

I was diagnosed with this well over 18 years ago I am 76 and cannot take the normal painkillers only paracetamol as I am highly allergic to all other painkillers. The way I have found to walk to minimise my pain is to have three wheel walker with a seat attached, I think the walking has actually helped me and if and when I feel too much pain I sit on the seat and then walk a few more steps. I never thought I would be seen with a walker but it has been a complete God send and I would not be without it. I hope you find some relief as we are all different as to what to use. Take care and look after yourself I hope you do not have too long to wait. x

Mistygreyhound profile image
Mistygreyhound in reply toDidgeydo

I have just got back from physio and he has referred me to MSK clinic but can't get an appointment till middle of September so looks like I will have to grin and bear it for a while yet,he did say that they can give you painkilling injections and manage pain relief which will be a godsend as we have a family hoilday booked for my birthday early October, will maybe try a walker in the meantime just so I can take my dog a little walk,but will be embarrassed at 1st as everyone who knows me as a fit and active person,nothing to get older for,thanks for the kind words xx

Mitch48 profile image
Mitch48 in reply toMistygreyhound

Hi there,

You’re fortunate to have an appointment with the MSK clinic within only a few weeks, no doubt the waiting lists for treatments including injections are longer, your first appointment next month may only be to see one of the doctors for them to glean some of your history in relation to your pain.

In my trust there are pain clinics & I’m presuming that the MSK clinics are the same or similar?

Kind Regards,

Mitch

Mistygreyhound profile image
Mistygreyhound in reply toMitch48

I dont feel very fortunate this morning after the night I had last night,an I feel drained,i could probably cope with the day if I could get a good night's sleep,same as you say the 1st appointment at MSK will probably be an assessment so nothing will be done,is the MSK clinic a pain clinic?can they do pain injections etc?as my phsio talks that fast I don't catch everything he says,as he mentioned the pain clinic at our local hospital and they can request an MRI scan as he can't

Mitch48 profile image
Mitch48 in reply toMistygreyhound

I totally understand where you’re coming from with that!

I’ve heard of the MSK clinics from reading other posts on here but am only familiar with the pain clinics that our NHS trust has set up & I’ve visited plenty of times over many years. I have also been treated at private hospitals through self pay.

A quick google search says that “usually you will see a physiotherapist on your first appointment who will create a treatment plan”.

A Muscular Skeletal Clinic treats certain conditions for example arthritis, carpal tunnel etc, the main symptom being pain.

Your GP can request an MRI scan too can’t they & of course in house at the pain clinic.

I hope you get the treatment you need for your pain.

Regards

Mitch.

Mistygreyhound profile image
Mistygreyhound in reply toMitch48

Thanks so do I,I filled an online form for doctors surgery after coming back from the phsio as that's easier than being in a que of about 15 just to get through to reception an asked if I can be referred to the pain clinic at hospital and for an MRI scan,and maybe try pregablin as I have been told that's a bit safer than a lot of drugs, an got a txt msg back to say I can have a phone consultation in 7 days time,why they could do it there an then instead of texting god only knows!!I am thinking of changing doctors as they don't want to know,or help in any way.Regards Carolyn

Mitch48 profile image
Mitch48 in reply toMistygreyhound

Hi Carolyn,

Sorry for the late reply but I’ve had it tough with pain, you know how that is!

At least you have a telephone consultation to be able to put your case across for an MRI & Pregabalin. I never liked the latter as I put 1 & 1/2 stones on in 7 weeks with it and I wasn’t overweight or overeating, I came off of that pretty sharpish!

Let us know how you get on.

Regards,

Mitch

Mistygreyhound profile image
Mistygreyhound in reply toMitch48

Sorry to hear youve had a lot of pain well i no further forward i'm araid,grrrrr,apparently its not serious enough to be referred for an MRI,I have to have problems with incontinence or numbness in my nether regions to warrant that,I told home it's serious to me to be in so much pain,and he said when i go to MSK clinic they will send to hospital if need be,he sounded just out of med school so probably didn't even know what spinal stenosis is or only what he had just seen on the Internet,also he said he didnt think pregablin would help,I gave up in the end,I am seriously thinking of switching surgeries as they are useless but maybe they all the same hope you feeling better now.Regards Carolyn

Mitch48 profile image
Mitch48 in reply toMistygreyhound

Hi Carolyn,

At least you spoke with a doctor who put your mind at rest, you don’t have any symptoms/Red Flags of Cauda Equina thank goodness! You don’t want to have, believe me!

You’ve not got long to wait until your MSK appointment & that should help you.

I don’t know if you’ve ever tried meditation or mindfulness to help with pain, it is possible to switch off to certain levels of pain, worth a try, there’s lots of free sessions & app trials online.

Yoga, stretching, gentle exercise can help even when your pain is bad, there are tens machines which help to distract you from pain, as well as hot & cold therapies. All worth a try as taking more meds is not always the answer & that’s even if they work.

I’ve recently stopped taking Naproxen after 18/19 years, it had stopped working, I’m not in any more pain but have stopped putting that and Lansoprazole in my body with all the side effects.

Positivity is key here too, glass half full & all.

I also know there are people worse off than me, as it keeps me grounded.

Let me know how your appointment goes.

Regards

Mitch

Carsok profile image
Carsok

I also have severe stenosis and go to pain management and get shots in my lower back and also have gotten ablation. Went about 2 months ago and the shots last about 6 months for me and then I go back. I also can't take any meds due to stomach ulcers. Don't want surgery since I'm 75 and so far shots have seemed to work for me. Have been getting them about 3 years now.

Mistygreyhound profile image
Mistygreyhound in reply toCarsok

Hopefully when I go to the MSK clinic in September will give a shot of something to take the pain away for a while x

jilly-124 profile image
jilly-124

Hello . Yes I had compressed nerves and all the same symptoms as you described and it is more painful than anyone can understand. I have had it years and years but again like you been put on all different types of pain killers to no avail. The problems started last year when I began to get incontinent as well, just going to the toilet may I add, but it got so bad I was constantly wearing pull ups or nappies as I call them. I went to the doctor regarding this, numbness at the bottom of my feet, cramps, sciatica, back pain and of course incontinence. I had CT Scan, MRI scan and xrays done and was put forward for surgery. I had compressed nerves which was even worse because spinal fluid was dripping onto them which stuck the nerves together so that had to be done before they could chizzle away at gristle around the nerves. I am a stroke survivor and also get COPD and Asthma but they still went ahead after a serious amount of tests but it worked. Sciatica has gone and pain in my back is much better. Unfortunately it may take up to 2 years to get my bladder back to normal but the releif is miserable. I can also stand up straight now and do not bend over like and old person (am 69 !!!!!!!) for the majority of the time.

Make My op was on the 23 May this year. You may be lucky. Thinking of you

jilly-124 profile image
jilly-124 in reply tojilly-124

Sorry the relief is not miserable but immeasurable

Mistygreyhound profile image
Mistygreyhound in reply tojilly-124

Thanks for that,there maybe a light at the end if the dark tunnel eventually then?at the moment I would do anything to get a bit of relief from the constant pain but seems there's always something to sap your strength xx

jilly-124 profile image
jilly-124

Oh I so know it. Your mind wants to do things like housework, putting washing on the line, but what used to take you no time at all takes forever. I am not completely out of the woods but so much better than I was. Do you feel like you want to keep bashing your back to make it go away. My doctor put me a tablet called Zupaine, It is codeine and paracetamol and it is quite strong and at least it may let you sleep a bit better, not waking in the night so much when you turn over. Also with these you can take up to 8 a day and it is safe. BEWARE TAKING THE 8 A DAY WILL PROBABLY MAKE YOU CONSTIPATED BUT IF IT MEANS YOU HAVE LESS PAIN YOU CAN ALWAY GET SOMETHING TO ELEVIATE BEING BUNGED UP SO TO SPEAK

LythamJohn profile image
LythamJohn

Gabapentine is good painkiller for neuropathic pain. However, Pregabalin, a more expensive version of Gabapentine, has far less side effects and is more effective at much lower doses than Gabapentine. Unfortunately, because of the cost GP’s try to avoid prescribing it, so it could take a little nagging and like Gabapentine it takes a 2 to 4 weeks before it builds up enough in your system to be effective.

Taking Duloxetine is especially effective for the treatment of neuropathic pain especially when used in combination with Pregabalin.

Whilst paracetamol is a reasonably effective, it is especially when used in combination with other pain killers so shouldn’t be dismissed.

You should really be taking something to protect your stomach such as Omeprazol.

Generally whilst most patients do experience side effects from these medications they normally settle down after 12 weeks.

Deep heat very effective for the treatment of muscle spasms, brought on by walking and standing.

Regards

Mistygreyhound profile image
Mistygreyhound in reply toLythamJohn

Thanks for that, the last time I saw the doctor she mentioned Gabapentine and Pregabalin but dismissed it saying it wouldn't help,maybe the cost played a role in that,I hate taking pain killers as all have side effects some worse than others,she advised me to carry on with amitriptyline but to take it around 7 pm instead of an hour before bed,just don't know what to do for the best,I just know I need some sleep as last few nights I am awake every time I move.

LythamJohn profile image
LythamJohn in reply toMistygreyhound

Firstly, non of us like taking tablets and with the associated side effects, but needs must. I believe if you can manage without means you don’t need them. This is not downplaying your condition or level of pain.

Your GP doesn’t sound helpful, unless he/she likes you visiting.

Going back to cheap and expensive medications. Amitriptyline is the cheap version, whilst Nortripyline is the better more expensive version with much, much less side effects in the morning. In addition you also don’t have to take the same dosage which further reduces the symptoms.

Patient need advocates to prevent patients from being pushed around.

TELL your you want to go onto 75mg Pregabalin twice daily and Duloxatine 30mg twice daily, for 6 weeks along with paracetamol when needed. And if he says no say you want to be seen by the pain clinic and that you feel the Dr isn’t taking your pain seriously.

And in 6 weeks you should realistically be much improved.

Mistygreyhound profile image
Mistygreyhound in reply toLythamJohn

Thanks for that,the physio mentioned the pain clinic at hospital and has referred me to MSK clinic,I not sure if this is the same as the pain clinic or the way to get to it,I was going to fill an online form this morning to my docs anyway,that's seems the best way to get some response from our docs as ringing is a very long wait and then all you get usually is a txt msg back,I will ask about pregablin an see if they come up with an excuse.

Pamrc1 profile image
Pamrc1

I feel your pain, if your on Facebook or YouTube have a look at Tom Morrison videos he has helped me so much with gentle exercise that help with movement. Thank goodness you've avoided amitriptyline I had this for 10 yrs it helped at first than gave me heart failure coming off it was horrible 😢. I've have cervical stenosis and had 2 surgery twice in 2010 with a cage fitted and been in pain since

PainConcernHelpline profile image
PainConcernHelplineModeratorCommunity ChampionPain Concern

Hi Mistygreyhound,

I have just been reading the replies to your posts and notice that one of them mentions talking to your GP.

At Pain Concern we have an online leaflet that will help you prepare for any visits to your GP and make sure you ask all the important questions. Check out the leaflet here. painconcern.org.uk/the-navi...

We also have some helpful leaflets that you can either download or order as paper copies from the online shop. painconcern.org.uk/product-...

Concerning medication, there are useful resources to be found by following these links painconcern.org.uk/airing-p...

fpm.ac.uk/patients/patient-...

fpm.ac.uk/opioids-aware

Hope this helps

Pain Concern

SouthernSally profile image
SouthernSally

Have you tried any of the over the counter pain patches like 4% lidocaine or Salonpas?

LaurieLee profile image
LaurieLee

Hi, I saw on this morning when Alison Hammond said she tried a Boot for plantar fasciitis that you wear overnight. Apparently, she wore it for about 6 months, but it’s really made a difference. Google boot for Plantur Fasiitis and they come up.

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