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pain relief for lesions on spine??

I recently received my mri results back from the pain clinic they scanned my hip and back looking for a suspected trapped nerve but instead my lovely ms decided it would to contribute at my spine as well as my brain!!!

They found a number of lesions (didn’t ask how many one is more than enough!) in my brain stem which i knew about but also a number in my spine. The pain radiating from this is causing me a lot of problems sleeping, walking, running, sex, basically every basic function is effected and limited because of the pain.

I have been on co codamol 30/500 for about a year or two but these do not help nerve pain so i’m told. They would maybe take the edge of it but it is not a satifying relief from the pain.

Does anyone else have this, i read that only around 30% of ms sufferers actually end up with this (lucky me) and know a helpful drug or alternative therapy that can help me?

Steph

Hi I’ve got several spinal lesions and get quite a lot of pain from them, I take tramadol with a paracetamol it helps to take the edge off. I’ve tried all the the other meds but this is the only thing that works for me.

Hope this helps

Chris.

Hi Steph,

As I understand it, lesions themselves are painless, so the pain you are experiencing is not coming from the lesions, but from the interference they are causing to your body’s communication systems.

The resulting garbled messages can get interpreted as “pain”, even though when there is no physical cause. That doesn’t mean the pain is imaginary: the pain signals are real, but caused by a “miscommunication”, not genuine injury.

Alternatively, the lesions can also interfere with motor communications (movement), which could mean, over a period of time, that your muscles are becoming weaker, or your gait and balance are a bit “off”. These things, in turn, could be an ACTUAL source of pain - e.g. if you’re constantly putting more weight on one leg than the other, this is eventually going to set you up for aches and pains.

Personally, I think “generalised” pain is a very common problem with MS, and that your 30% figure is rather on the low side.

Effective treatment of pain requires first identifying what caused it; i.e. is it garbled messages being interpreted as pain, or is it real physical pain, caused by muscle weakness or abnormal gait, for example?

The approach in each case is different. If it’s the first type, it will ONLY respond to drugs specifically prescribed for nerve pain, not conventional painkillers like cocodamol.

If it’s the second type, it may respond to conventional painkillers, but you may have to experiment with both type and dosage to get the best results. There are alternatives to cocodamol available on prescription, if you find this isn’t working for you.

Physiotherapy can also help with pain that is caused by physical changes to muscle strength and the way you walk - you can do exercises to improve strength and balance, which may reduce pain.

Finally, even though it’s not a painkiller, I wonder if you are already on a muscle-relaxant such as Baclofen? Sometimes the pain is caused by excessive resting muscle tension (aka spasticity), because instructions to tell your muscles to relax aren’t getting through properly.

This understandably makes the muscles feel tired and crampy. So sometimes, if you take something that forces them to relax, you will find the pain eases too.

Tina

i know the lesions themselves are painless and that lesions in general are common but i was informed that spinal lesions are quite rare and that is what i meant by the 30%.

I have had back and hip x rays before i was dx with ms and my hips and back are perfectly healthy in that aspect so the conclusion we have came to the lesions in my spine are telling my brain im sore even though there doesnt seem to be an explanation for why.

I have been on 2 nerve tablets when it was a suspected trapped nerve but they offered me no relief either.

Although spinal lesions aren’t universal, I’ve never been informed it’s rare.

For me, the spinal lesions were the first to be found, and that’s what prompted the scan of my brain - where yup, more were found! So I suppose I’ve never really thought of it as rare or unlucky to have spinal lesions - not unluckier than having MS at all, anyway.

If the pain is caused by tight muscles or altered gait, I wouldn’t expect it to show on an X-ray, so I still wouldn’t completely rule that out.

The fact cocodamol helps at all suggests it’s probably NOT nerve pain, which typically wouldn’t respond. You don’t say what sort of dose you’re on, or whether it’s already the maximum, but if not, you might just need more.

I was on 6 to 8 a day, on prescription, which my doctor assured me could be safely metabolised by someome of normal weight and build, and with no pre-existing liver problems.

I was very happy with the regime at first - I didn’t always take the maximum allowed, but varied it to suit. It certainly seemed the best thing I’d tried.

Then abruptly, after about a year, codeine started making me sick. I tried having a complete break and re-introducing them, but sadly, I’ve never been able to return to regular use without getting queasy again. So that was the end of the best painkillers I’d found.

I’m still able to take the odd one if I get desperate, but mostly I’ve had to replace them with ibuprofen, which is less effective (for me) and less suited to long-term use.

Anyway, all of this is a bit of a long aside, because it might not happen to you. If cocodamol is showing some effect, but you’re not at the maximum dose yet, it’s worth asking your doc if you can experiment with taking a bit more.

And I still think it’s worth exploring the Baclofen, if you’re not already on it, as tight muscles tend to cause chronic pain.

I’m not suggesting any of this will be either 100% fix, or a permanent one. The likelihood is you will still have to live with some pain. But it’s certainly worth enlisting your doctor’s help to find a compromise that works OK for you.

Tina

heya…as others say pain is diff depending on cause…I take co codimaol also but find it even better if combined with naproxen 500mg at night and in morning. also hada short course of Diazapam 2 mg at night and in day…which def helped spasm…but gp would prescribe a longer dose…still have some baclpfen from previous neck pain and spasm …it’s prob best to play about with the combination and timings of drugs and combine that with physio. or exercises you can do at home. I think the body can also adjust itself to try and avoid pain which is not great for posture but mother nature isn’t always great in that sense. .am awaiting spine mris and waiting to see if I havea structural spine prob or tethers spinal cord or something else entirely!! e

As others have mentioned it’s trial and error to find which combination of meds will help your pain.

I take amitriptyline, tramadol, paracetamol and iboprofen.

If what you have is nerve pain then traditional painkillers wont help that, I would go and speak to your GP and keep pestering them until you get something that works for you.

Hi there, I found your posting very interesting. My GP said to me when I developed a very painful pain in spine, it was the spinal lesions causing the pain. The pain was so bad and right in my spine. I couldnt understand how this could be if the lesions dont cause pain, but it makes more sense to me now. I was put on gabapentin, diazepam and increased amitriptyine. My last relapse started with very sore pain in my spine, back spasms, followed by numb foot and very weak leg. I was given steroids and thankfully back pain left and I could feel my foot again. It took a number of weeks of physio to get the strength back in my leg.and I now do the daily exercises given to me by the physio. Im just wondering if anyone else has experienced a relapse which started as back pain? Best wishes Heather

Hi Stephen

I have painful spinal lesion, also the feeling that a bone is sticking out of my back, weird. I have found that Amitriptyline taken at night has helped with this.

Wendyxx

I have a lot of spinal lesions and have a lot of nerve pain - pain clinic suggested Butrans patches and I have found them to be excellent. Well worth asking your GP or pain clinic for.

Sally

Just a note, I was put on Pregabalin for this but it didn’t do much. I’ve also had Naproxen but, meh, can’t tell really. The only thing that truly stopped my pain was a crazy shot of very strong painkiller when I was in hospital after a particularly bad sudden bout of pain that gave me a panic attack! This was incredible but put me in cloud cuckoo land! I certainly wouldn’t want to be dependant on things like this though.

all my relapse begin with severe lower back pain, i dont think i have had my lower back done in mri so dont know if i have lesions , another question for neuro when i see him this month,