Nerve pain

[Christinecove]

I had a Spinal fusion July 18 and the nerves from L4 L5 got damaged and I have been in chronic pain in my whole left leg. I have tried most things from Morphine based tablets then Pregabaline, Amitryptaline you name it I’ve been on it. I’ve tried loads of vitamins which I am still taking. I’m using Biofreeze gel like anything. I really would like to know if there is a good cream out there? I’m desperate

[CLARAmay]

Hi Christine I have Nerve pain L4 and L5 damage but haven’t had an op, I get terrible pain in my legs and I use heat packs pysio said they need to be streght, I do hydrotherapy it awesome for pain but massage by pysio helps too I understand the pain x

[Christinecove in reply to CLARAmay]

Hi yes I have physio and hydrotherapy, but I had to stop the hydro it was too painful on the leg, it’s just so sensitive and sore to touch only I can touch it, if anyone else did I would hit the roof

[Hidden]

Nerve pain like that isn't eased by rubs, I've tried them all believe me. Have you asked about a pain clinic referral or has one been mentioned? I know what works for one doesn't necessarily work for another, but the pain I felt in my arm from discs out in my neck has been helped tremendously by having a nerve block twice a year.

[Christinecove in reply to Hidden]

Hi I actually had nerve blocking done before I had the fusion to see if that would help my back pain then but obviously it didn’t. The Consultant tried everything to prevent doing the operation. Whether it would help me now I don’t know. I will mention it to my pain management Consultant I’m seeing him on Wednesday. Surely there must be something out there. I just can’t keep on with these sleepless nights it builds up and I have to take a sleeping tablet then to get some sleep which I definitely do not want to keep taking. I have also had 2 Lidocaine Infusion s where the first one helped slightly so 7 weeks later he done another one but that made no difference sadly.

[Hidden in reply to Christinecove]

I had them done L5/S1 years ago and they didn't work, but things have advanced now and the ones for my neck work brilliantly (C3-C7), but what works for one doesn't necessarily mean they work for another obviously. Thing is, having a fusion just means you can't bend your back where it's done, it won't prevent further nerve damage and nerves take a long time to repair, if ever, plus of course, the nerve damage caused by cutting through them to get to the operation site!

Have you tried relaxation techniques? Might be a stupid question, but I know that not being able to relax causes tension in the muscles and in turn makes the nerves think that they're under attack, so they start sending pain messages to the brain. It might be worth looking into some kind of meditation just before bed. I know it sounds mumbo jumbo, but I got to the stage where I wanted my legs chopping off with the pain in my hips, sciatic pain and nerve damage pain, I cried every night with it. Then someone recommended meditation and it did help me to relax, which in turn helped me to sleep. I wasn't pain free, don't think I ever will be, but it really did help.

[Christinecove in reply to Hidden]

Yes I will give that a try. I will try anything, me too have thought I wished they would chop the leg off, plus I’m in tears during the night. Thanks

[Hidden in reply to Christinecove]

You get like that don't you? Wanting to try anything to get rid of the pain! Then chopping off a limb causes other pain, severed nerves and phantom limb pain, it's a never ending and vicious circle!

There are apps for meditation, most are free. If you don't want an app, then there are CDs and I'm sure on DAB radio there's a channel, all worth listening to.

[PFKAAde]

Hi Christinecove

I know how you feel as I had a series of discs prolapse which caused severe spinal stenosis and resulted in me having bilateral sciatic pain for a few months before waking up one morning and couldn’t walk.

I ended up having a series of nerve root ganglion blocks and two emergency laminectomies, one at l4/5 and one at c2/3.

After these I was left with bilateral sciatic pain down to both feet, but worse on the left, along with various other issues. Like you, my surgeon desperately tried to avoid a fusion, unlike you my vertebrae auto-fused and I avoided the need for a fusion.

Following the procedures outlined above I still had nerve pain in both legs down to my feet and had lost so much muscle that my spine and pelvis was clearly visible through my skin.

At that point I started seeing a personal trainer who knew a lot about recovery from back injuries. I started mainly because I realised that one of the reasons I couldn’t stand up was the lack of muscle.

For the first few months it was extremely painful after each session for few days, but a part of the sessions was learning about trigger-point release using foam rollers and / or tennis balls (really effective!) alongside lots of stretches for hamstrings, hip flexors, piriformis muscles etc, and also for the back. The exercises involve some cardio tonwarm up (using cross-trainer at first) followed by resistance exercises, core strength and targeted weights.

After about 3 - 6 months of this the sciatic pain reduced and now (3 + years on) I thankfully don’t get that sort of pain at all. I still have many issues, such as balance, muscle weakness, spondylolisthesis, feet / toe pain etc, but thankfully not the nerve pain.

Whilst your situation is not exactly the same as mine, there are certainly some similarities (I ended up with 8+ discs gone) and if I was you I would look into finding someone who has lots of experience of these types of surgeries / pain and may be able to assist you. As hard as it sounds, and it is, it is the best thing I’ve ever done for myself. I truly believe I would still be having a lot more pain had I not taken that path.

As you’ve had a fusion there will undoubtedly be things that you need to watch out for (hence the professional help), and the nerve damage may or may not mean that my outcome is not achievable, but again - if it were me that is what I would look into.

All the best.

🙏🏻

[Christinecove in reply to PFKAAde]

Hi thank you so much for your reply. I did suggest to my Consultant and physiotherapist about trying a personal trainer and they put me in touch with one. Unfortunately I can only use 2 of their equipments, the bike and a weight leg pressure one. I’ve been doing this and slight cardio exercises for 2 months now as like you my muscle wastage is horrendous. I am really trying to persevere with it all. I work with all these people at a private hospital and have done a lot of research on all of them. It’s so hard not to give up I am trying to be positive but am still having to use 2 crutches and it’s 8 months and my knee is so weak it keeps giving way.

[PFKAAde in reply to Christinecove]

Hi Christinecove

I know exactly what you mean. It is hard, and it is a slow process unfortunately. I’ve been going for over three years now and there are some muscle groups I have realised will never fully recover. On the other hand there are other areas that are better than they’ve been for years.

I’ve had rheumatoid arthritis for 20 years and so hadn’t been doing the exercises that I should have. Since going to the gym I have less pain in areas that have hurt for years (got a bad shoulder with torn rotator cuff for example, which is inoperable and painful - much better now!).

I would definitely recommend that you carry on as you are, it took a while to see much progress but some things (like core / abs) improved relatively quickly. I saw enough improvement to motivate me to carry on, put it that way. Seeing a PT has also been a good motivator! Much easier not to go if it’s jist you, I find.

The machines at the gym are of mixed use for me. I can now use a bike, treadmill (walking not running!) and cross trainer for cardio. At first it was cross-trainer and it hurt! Due to foot / knee issues the bike and treadmill have been slow progress, but still progress. As the muscles in my legs are affected by the nerve damage above they will always be weaker than ‘before’ but they are now much stronger than when my back first started falling apart.

The resistance and weights have been hugely important in improving muscle mass and tone.

If you keep it up you will definitely see some progress, as tough as it is. Like I mentioned it took a while before the sciatic pain started to ease off. Not having that pain any more is payment enough for the effort to be fair. You have my empathy (and that of lots of others on here). Nerve pain is relentless and tough to cope with.

Personally I found most of the drugs they give you caused me more problems (and then some) than they helped, but some find limited relief from some of them. For me none of the anti-epileptics or tricyclics helped with neuropathic pain (or any other pain) and in one case (pregabalin) was very problematic to be on and get off. You might find they help (if offered) but I’d urge caution because they can be horrible to get off. Took me 2 years to get off pregabalin and that was after about a year of problems that nobody thought could possibly be from that (it totally was though). It never helped in any way.

Amitriptyline helped with sleep to some degree, but left me feeling very groggy and did nothing for the pain. Again your mileage may vary...

I wish there was a quick and easy answer, as do many of us. Others may recommend things like Alexander technique (can’t comment but have heard good things), chiropractic (personally wouldn’t risk it, results vary massively between practitioners and can be catastrophic), osteopaths (as for chiropractic to some degree) and other modalities — all of which I’d say to tread carefully and do your research.

And then there’s acupuncture (little to no actual evidence of efficacy. Despite some studies that claim positive results every study I’ve seen that has been picked apart by an actual expert has been shown to be biased, poorly constructed, badly interpreted or any combination of them: theness.com/neurologicablog... ), homeopathy (I’m not even going to bother with that one unless you believe that water has a memory and magic is a thing).

You might notice I’m skeptical of things that have no evidence to back them up!

Assuming you are in the UK medical Marijuana isn’t (yet) legally actually available, but IMHO can offer help with pain, sleep, anxiety etc. More evidence is needed to prove this though and more consistency in treatment provision. Will be expensive when available and unlikely to be available on (NHS) prescription for the foreseeable future.

All the best.

🙏🏻

[PFKAAde in reply to Christinecove]

Also your comment about not being able to use the machines has reminded me that after I’d been going to the gym for a few months we tried out the ‘prone hamstring curl’ machine. Basically lying on your front and bending your leg at the knee with adjustable weight on the machine at your ankle. I couldn’t even lift the machine with no weights on it. We spent about 6 months doing the same thing with me on a mat and the PT using resistance bands to control the effort required. Then I went back to the machine, built up slowly, and can now do 17kg on each leg.

Things do improve, it just takes time.

🙏🏻

[Konagirl60 in reply to Christinecove]

Don’t give up. You have to be your own advocate.

[Christinecove]

Thank you so much for your reply. I will look into a lot of this. I also have tried acupuncture. I am trying to train my brain at the moment. I am thinking positive. Mostly I am at the moment coming off the Pregabalin like you said I’ve been exactly the same. I didn’t feel myself and in control at all on the 600mg daily. I am now down to 100mg and I cannot wait to get off of them. Why do they keep giving all these drugs, if they don’t make you constipated they stop me sleeping Insomnia it’s terrible. I can cope during the day it’s at night as everyone knows that all the nerves start up. I am so so fed up with repeating it all. It’s all a case of catch 22. I’m trying really hard at the moment with the exercise bike and the resistance band etc

[PFKAAde in reply to Christinecove]

Hi Christinecove

There is definitely something in positive thought. Which is easy to say! Distraction also good but sometimes it is difficult to find things to do that don’t aggravate the pain I sometimes find.

I had a lot of issues with pregabalin and it ended up taking me a couple of years to taper off it as large reductions made me feel rough for weeks. And forgetting a dose 😱

Opiates don’t really do a lot long-term for me, and it is difficult to get off them when your body gets used to being on them (I’m finding!). And like you say they can constipate you

Anyway I hope you find something that helps.

🙏🏻

[Christinecove in reply to PFKAAde]

Thank you all

[Konagirl60 in reply to Christinecove]

Good for you. Get off that poison!

[micox]

Hi. I'm 80 and in 2010 I was diagnosed with a degenerate lumbar scoliosis and stenosis with a trapped nerve root at 4/5. Surgery was ruled out. I'm unable now to walk or stand for more than a minute without sciatic pain down the side and front of my left thigh. At first I took Pregabalin for the pain but hated it dulling my intellect. With my absolutely excellent GP's help I came off it in six months two years back. I now don't take anaelgesics at all. I was a mental health social worker for 30 years and used total relaxation techniques and acupressure in my anxiety anxiety groups. That has been invaluable in managing pain but I still get intermittent sciatic pain lying down or sitting in an easy chair. I've also found, goodness knows why, raising my left knee into an inverted V relieves and stops the pain. Just a word about one of my shoulder chips! Working in mental health I supported quite a few people with MH problems arising from the side effects of steroids. I strongly object to doctors and consultants telling people they'll give them a "Nerve Block Injection" when what they mean is they'll give you a Steroid injection (and this is in a supposed NHS set of values which include 'openness and honesty!' Beware.

[Hidden in reply to micox]

You strongly object to people being told they're being given a nerve block injection... All I can say is, the consent forms all state what the injections consist of and any doctor or specialist worth their salt would explain thoroughly what they're putting into your body, mine did!

rcoa.ac.uk/sites/default/fi...

That explains everything about the nerve block I have, nowhere in it does it state that a side effect can be mental health problems. I think that constant pain can cause them, in fact I know it can, I am a victim of them, but please, don't scaremonger. The steroids your clients used were probably nothing to do with the corticosteroidal injections used to kill pain.

[micox in reply to Hidden]

My objection is about supposed honesty/openness. The term 'nerve block' is not honest. My consultant didn't produce a consent form let alone explain the constituents of the injection (and he is well respected). The mental ill-health side effects of Steroids are well known. I worked in a drug and alcohol clinic at one time and found that most GPs knew very little about iatrogenic problems with prescribed drugs, Benzodiazepines for instance. I do also know that short-term corticosteroids present minimal risk but they need to be honestly specified.

[Hidden in reply to micox]

All hospital procedures, no matter how small, have you sign a consent form both before the day of it and on the day, so if you've never signed one I would be very surprised. By law, you have to be warned of any side effects the procedure could cause. Respected or not, he would have to give you a copy of the form on the day of the procedure and have you sign one before to say you agree to having it done. I only found one of my old ones when I had a clear out the other day and chuckled at the dramatic description "could cause stroke or even death". But joking aside, where I have the nerve block (and it is a block, the corticosteroid surrounds the nerve to prevent pain signals from reaching the brain), at C3-C7, it is a very delicate area and a slip there could cause those, as well as paralysis and other life changing side effects. But, the corticosteroids used in nerve blocks are not the same as the anabolic steroids you describe:

verywellhealth.com/anabolic...

There is a huge difference and like I said, scaremongering, saying that a nerve block is an injection of a steroid that can cause mental health problems is wrong!

[Konagirl60 in reply to Hidden]

Nerve blocks done properly with fluoroscopy or CT guidance are only a diagnostic tool.

They ARE NOT a treatment however, for anyone with a nerve that is being pinched 24/7 when they sit, or lie down, the addition of steroid in the injection can numb the pain for up to 24 hours and in some lucky people indefinitely.

I had a properly done nerve block done and it proved the rear section of my right pudendal nerve was being pinched/ compressed. I sat pain free for 22 hours for the first time in 2.5 years.

The sad thing is...I’m Canadian. No one in Canada handles this now. Back in 2008 when my nerve compression injury occurred, the only neurologist who knew about it was in Toronto. I live in British Columbia.

The doctors in British Columbia suggested I have nerve blocks with a local injection of only anaesthetic and while in the transvaginal position. I didn’t have pain in my vagina! I wasn’t delivering a baby. This method is used for childbirth pain!

My rectum was electrocuted. The nerve blocks I had done in British Columbia were done incorrectly without imaging and with not nearly enough steroid. I was misdiagnosed as a result with post herpetic neuralgia...NOT!

Even after a trip to Minnesota where an expert diagnosed me...the doctors in British Columbia disregarded the diagnosis and suggested treatment plan. Why?

In the big picture?.... a migrated metal titanium Filshie clip that had been used in my tubal ligation eight years earlier HAD MIGRATED TO MY RECTUM and it stretched the rear section of my right pudendal nerve and a section of my inferior rectal nerve! The radiologist saw it on MRI and did not report it! They were worried about a lawsuit.

Instead I was labeled with a nerve imbalance and treated as someone with mental health issues. NOT!

It’s been the struggle of my life to save my own life. I cannot get any justice for what happened to me. The doctors in B.C. committed libel, fraud, I was neglected, over sedated and left to die in agony.

I DID have pudendal nerve entrapment. I was very athletic and the above mentioned nerves were stretched and got stuck between two ligaments in my ischial spine. I was always telling the truth.

I was a Mother. My son and I suffered a forced disassociation....the incorrect diagnosis and medications I was given and life threatening pain plus inability to sleep made me go insane. My son witnessed this. He is a mess!

How can doctors get away with this kind of behaviour? It’s criminal.

[Hidden in reply to Konagirl60]

Well sorry for not using the correct terminology, my pain specialist calls it an Occipital Nerve Block, it most certainly is not “just a diagnostic tool” it keeps me relatively pain free in my left arm for most of the 6 months until my next lot of 6 injections. So I would think that a pain specialist would know what to call something, wouldn’t you?

I haven’t read your entire post, I couldn’t get beyond the first paragraph.

[Konagirl60 in reply to Hidden]

You’re lucky and I’m glad your nerve injections help. Many many people find that they do not help them. They have to be done correctly and in many cases they aren’t.

The pain specialists I’ve met and also read about on other neuropathy pain blogs I have joined, seem to be predominantly anesthesiologists. Their specialty is sedation. They haven’t experienced neuralgia.

All they do is prescribe useless medications like anti seizure drugs which are useless for a pinched nerve. Pregabalin is poison...it damages the brain. Lyrica and Cymbalta have terrible side effects including massive weight gain, chronic dry mouth, brain fog and zaps, and irritability.

Opiates are just as bad. I refused to take Oxycontin. A fentanyl patch was useless to.

I’ve found that women are not taken seriously, especially by old school male doctors. They gaslight us and say we are depressed. No, we are in agony from a neuropathy.

I needed properly done nerve blocks into the pudendal nerve root in my buttock! If three done a month apart didn’t help, I needed stat decompression surgery.

The fact that you didn’t take the time to read what I wrote and experienced makes me feel you have no empathy.

[Hidden in reply to Konagirl60]

Almost all pain specialists are anaesthesiologists, mine is, but he also specialises in pain and the GMC certainly wouldn't let anyone practise medicine without the right qualifications.

It seems to me that you won't accept any help offered. Every person I have spoken to at the clinic I attend (Yorkshire Clinic, Bradford), awaiting nerve blocks for one reason or another, swears by them, both men and women alike. But they've mostly been women, with varying degrees of spinal pain.

I take Oxycodone, it has no effect on me other than it takes away a lot of pain. Gabapentin and Pregabalin (which is Lyrica) , didn't cause any of the side effects you described for me either. I think if you read the leaflets with the side effects, you think yourself into having them; either that or I have a high tolerance. But, if you won't try them, how do you know? Why suffer if there are medications out there to help you? You seem to know what you need, so have obviously researched, sorry, but I would rather go with what my doctors and specialists suggest. Surgery doesn't always alleviate pain, even if it does release a damaged nerve. Believe me, I know from L5/S1 nerve damage (numb everywhere below the waist) and the surgery to relieve that, which left me with damage and constant pain. They won't touch my neck, hence the occipital nerve block injections.

I have every sympathy and lots of empathy for those who will at least try treatments offered instead of telling others theirs is worse and that the treatments they are having are poisoning them! Your post was waaaaaay too long to read.

[Christinecove in reply to Hidden]

Everyone is different. Maybe you shouldn’t have even read it if it was way too long.

[Hidden in reply to Christinecove]

I didn’t read her full post, that was my point. 😳 I now have... and yes, everyone is different but this member has a completely wrong perception of what a nerve block is.

[Christinecove in reply to Hidden]

Yes I do agree with that too

[Christinecove in reply to Konagirl60]

Hi I did read them it’s just I have been so busy with family. I agree with what you stated.

[morphalot]

Hi Christinecove - I was in terrible pain about 7 years ago in my lower back and down my legs. I had surgery which helped somewhat. My pain clinic then referred me for a spinal stimulator which I had fitted 2 years ago. It has helped loads. Other people have had complete recoveries, and managed to return to work, no longer on medication. PM me if you want more information, but it is literally miraculous! Take care x

[Christinecove in reply to morphalot]

Hi morphalot, I was considering the stimulator but was advised to go for the spinal fusion instead. I took weeks to decide. I know a few people at work who had it done.

I must admit my back is so much better now after the fusion it’s just the nerve damage and the lack of sleep night after night unless I take a sleeping tablet just now and again. I’m not quite sure if I can have it now, I’m seeing my Consultant I will chat with him.

Thank you

[morphalot]

Hi I had a fusion in 2014 and had the stimulator put in 2016. Anyway if you have any more questions, just ask!

[Christinecove in reply to morphalot]

Ok thank you

[EvaK82]

I have a slipped disc at L4/5 and my leg is in the same pain. Current so bad that I can only lay on tummy

I take Oxycodone long and short acting, Amytriptiline, Paracetamol and Ibuprofen.

I am also getting epidural injections which contain steroid and lidocaine pain killer.

Good luck 🍀

[EvaK82]

Ps - Amytriptiline takes a good few weeks to work and you might have to be dosed up (I started on 10 and am on 30mg now). You could also try lyrica or tapentadol which are for neuropathic pain. Google neuropathic (Nerv) pain guidelines

Most painkiller are really for nociceptive pain (like muscles etc) and wouldn’t help us

[Christinecove in reply to EvaK82]

I have been on all those which you have stated but they either made me feel not in control or constipated or the tapentadol kept me awake insomnia still after 2 weeks. I just don’t know what else to do. I am just weaning off Pregabalin and only using Biofreeze I just cannot stand it. I’m glad they work for you, they are not for everyone, good luck

[EvaK82 in reply to Christinecove]

Oh dear... yes they do constipate 😳

Have you tried acupuncture? Some people swear by that..

[Christinecove in reply to EvaK82]

Yes I have, it wasn’t successful either

[Flossy61]

Hi Christinecove ,I hope you are continuing to improve and hopefully getting on better with the nerve pain .

My consultant wants me to have a decompression and fusion ,after all the reading of info that he pointed me too and reading comments like yours ,I think I've come to the decision not to have them or at least the fusion !. I think it's something I will prolong as long as I can. My pain is awful now ,the last 3 nights only 9 hours sleep between them ,but the t thought of even more pain for a possible good outcome with a life span of not much more than a few years,I don't think so . Sadly when bits wear out we are often in a worse place pain wise than broken limbs and such ,because our pain never truly resolves. No medication no operation will eradicate it. But as others have said ,strengthening our bodies,relaxing,meditating are great allies ,for me anyway . And though gym work means feeling pain for a bit ,the knowing we are helping ourselves and the feel good factor ,are worth it .

Stay strong and listen to your body ,stop when you need to

Wishing all the best

[Christinecove in reply to Flossy61]

Hi, yes I’m still suffering badly and the nights are so bad. If I take a Zopiclone 3.75 (sleeping tab) then I may only wake once or twice and I apply the Biofreeze and then because of the tablet I can get back to sleep. But who wants to keep on with those for evermore. I feel so low at the moment. Someone recommended trying the CBD oil from Holland & Barrett drips under the tongue. So I’m willing to try anything so that’s my next thing. It’s killing me doing my exercises each day, that’s getting worse instead of better.

So I think your very wise not to have the fusion, I’m afraid that’s all I can say to you.