Bone Health

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Sunseaandsand profile image
36 Replies

Hi once again,

I am desperate to hear from anyone who has had experience of the above medications when used for pain.

As some of you are already aware I have 4 spinal fractures and multiplee other conditions of the spine.

When my last fracture occured last year I had excrutiating pain around my front right rib as well as in my back and the other areas the fractures cause pain.

I then behan to feel an uncomfortable burning under the right rib which then went on to a feeling of something moving which then progressed to pain also.

This has gradually got worse to the extent that it is unbearable and can feel like something is pushing and pulling.

I call it my PYTHON but on a serious it is beyond imagination, it drives me crazy I actually do scream out loud, and I have cried buckets with it.

I have had several opinions and countless doctors appointments to find out what the cause of it is, and because of not getting a diagnosis I paid privately to see a gastroentiologist even though I had an appointment exactly one week later to see one on the NHS.( thats how desperate I have become over this)

As a result I shall be having a CT colonoscopy next week, but was told if all is ok then it will be down to nerve pain coming from spine damage.

I was told that Gabapentin and Nortryptiline work well for nerve pain and I would only be put on a low dose.

I really would love to hear back from anyone who has experience of either of these meds good or bad.

I do not tolerate medications too well but will be all too willing to try anything that may help with this as on top off my back pain it really is getting me down.

Thanks to you all for reading.

36 Replies
Nanaedake profile image

I don't have experience of the pain relief you describe. I don't tolerate pain relief very well either. Have you tried an experienced NHS acupuncturist? It has worked really well for family members. They must be well qualified and trained in chronic pain relief treatments and have experience. Any old acupuncturist won't do.

Sunseaandsand profile image
Sunseaandsand in reply to Nanaedake

Thank you for your reply, I was attending the pain clinic up until recently they told me that for my type of pain they could not offer me anything else other than medications.

I was wondering if I could put my post somewhere else to reach people who have experienced these meds for nerve pain.

I do not where or how to do that though.

Jennymary profile image
Jennymary in reply to Sunseaandsand

Hi this might sound like the last place to get the advice you're looking for, but HU have a Care Community which helps and supports people caring for family members with serious health conditions, you might find something there, if you don't you can always unfollow the community,

Sunseaandsand profile image
Sunseaandsand in reply to Jennymary

Thank you so much, I will look into what you have suggested.

Nanaedake profile image
Nanaedake in reply to Sunseaandsand

It could be your particular district, not all locations offer acupuncture on the NHS but it doesn't mean it won't work. If the people in the clinic are not experienced in acupuncture they won't know whether it will work for your type of pain or not. It could be worth researching.

Sunseaandsand profile image
Sunseaandsand in reply to Nanaedake

It was the Pain consultant who told me, they do offer acupuncture to patients who they think will benefit from it.

I think once I have the ct scan done then I can push for more help, I am counting the days to get a proper answer and be treated accordingly for it.

I feel it's terrible I should have been left all of these months without a proper diagnosis and treatment for it.

Don't like to sound sorry for myself, thank you again for getting in touch.

Nanaedake profile image
Nanaedake in reply to Sunseaandsand

Yes, I think you needed effective pain relief earlier by the sounds of it.

Badsideeffects profile image

“Cried buckets and literally screamed“ makes me feel so sad for you because I know exactly what you’re talking about. I’ve spent hours crying myself. I’ve used gabapentin for neuropathy with no side effects so far. I cannot believe that the doctors do not prescribe something strong for your pain. I think some MDs are just sadist and cruel. Are you able to get CBD oil? Have you had an MRI?. I have been in diagnosed with herniated discs, spinal stenosis, Arthritis and osteoporosis. Have you ever had the Prolia shot? Stay away from Prolia please! It is used for osteoporosis. I will be praying for you Sun.

Isiah 53:3. Blessings and healing and I pray you get pain relief because it’s unbearable. Feels like you’re going to go crazy.

Sunseaandsand profile image
Sunseaandsand in reply to Badsideeffects

Thank you for your understanding,I was given pain releif in the form of Oxycodone last year when my 4th fracture occured, at that time it was impossible for me to move even a fraction without it.

I was reduced down gradually without any problems.

The problems I am experiencing now were not helped with the Oxycodone (although I think it is possible that the Oxycodone was masking the severity, as the dose was lowered the pain and movement increased)

I had one injection of Prolia last February and have suffered so many side effects because of it.

I have refused anymore treatment with it.

Four fractures without trauma despite having just about every treatment there is available for Osteoporosis.

I am now questioning are the treatments worth it.

At the moment I have decided no more of anything.

I really need to get a diagnosis of what exactly is going on and causing my problems.

Strangely enough when I had the Prolia shot it was given in my stomach high up and around the area I am having all the pain, burning and movment.

As soon as it was given a lump swelled under the skin and it felt like it was burning.

I am not only going crazy with the feeling of something moving and burning, its driving me mad not really knowing what it is and what has caused it.

Cally55 profile image

I recognize your story, I too have 4 spinal fractures and have had radiating pain round under my right ribs. I was sure I'd broken one! The fracture clinic assures me it is radiating pain and it has got a lot better over time. I got my fractures in two batches, about a year apart, first T7 and 6, the last ones T5 and L3 about 10 months ago. It has taken me about 18 months from the first fractures to get anything near adequate pain relief. The first year was pretty grim but it does get better.

I now take Pregabalin twice a day, slow release Morphine twice a day and Paracetamol and a Lidocaine patch. I also have acupuncture from time to time privately which helps a bit. Pregabalin is similar to Gaberpentin which I couldn't get on with. I also tried amitriptyline for the underlying condition I have but got a bad reaction.

I had a long wait for the pain clinic which was excellent and very helpful. The doctor increased my pain meds as well as introducing me to non drug therapies, I am still on a waiting list for a series of seminars on the psychology of pain.

Although I am now nearly 70 I have always led a very active life, all day on my feet, so I have really struggled with this disability. I find that with this lot of medication I can do a bit but still have to stop at about 4pm even with rests at regular intervals!

I think one has to persevere to reach some sort of improvement, it took several visits to the GPs before I found one willing to change me from Tramadol to Morphine which was much better, and interestingly works at a much lower equivalent dose.

Sunseaandsand profile image

Hi and lovely to hear fom you.

My first fracture was in T11 and occured about 9 years ago.

My second and 3rd occured 1 month apart in May and June 2017.

I was still struggling to recover from those when I had my 4th last January.

I can only move around the house for very short periods, basically to keep everything moving.

Because of a problem with Chronic constipation I was put on Targinact which is Oxycodone and has another ingredient to help with constipation.

Even with this my bowel was not working properly.

I am of a very low body weight which means I can not go up to high doses, I became tolerant to the dose I was on and sleeping all day so came off them gradually.

I need something to help me because I can not go on like this.

What worries me is that the pain, burning and movment has increased rather than improved so I am now beginning to wonder if the Oxycodone was actually masking some of it.

I have been discharged by the pain clinic, but do now have a good doctor( who it can be difficult to get an appointment with.

Do you have liquid morphine or tablet form, can I ask what dose you have?

Does it cause constipation for you?

Lots of questions I know but would really apreciate hearing back from you.

At the moment I can not even hold a toothbrush to clean my teeth or wash my hands in the basin without it feeling like I have a Python under and around the right rib area.

It appears you have excellent health care and support from the doctors you see, that is so very important to getting anywhere.

Cally55 profile image
Cally55 in reply to Sunseaandsand

I take 150mg pregabalin and 10 mg slow release morphine in tablet form morning and evening. I weigh 72 kg and am 5 foot 2ins, I used to be 5 foot 6. At the moment I also have some oromorph liquid as well because I had a bad very low back pain a couple of weeks ago and they thought I might have another fracture, fortunately x ray showed not. It has slowly got better but still have a shooting pain down one leg, I have an appointment with the fracture clinic before long so I shall ask about it then.

I have a constant battle to keep my bowels on an even keel. The morphine slows them down, some of my other meds speed them up and I had a section of bowel removed 10 years ago because of diverticulitis. I find diet and occasional cosmocol sort it. One of the few positives, possibly the only one, of this mess is that I can eat as much fruit veg and pulses as I want, something precluded by the diverticulitis on its own!

Sunseaandsand profile image
Sunseaandsand in reply to Cally55

Thank you for sharing that with me.

Yes with all medications we seem to have to weigh up the pros with the cons.

I am hoping after my colonoscopy next week I will be able to try some of the different medication and perhaps get some relief from my symptoms, without it causing other problems.

I am hoping all will be good with the bowel so I can at least rule that out.x

Collywobbles64 profile image

Ask for a nerve conduction test. I have seen numerous consultants for my lower back pain spreading down my legs, causing difficulty walking. Although I have no fractures from my osteoporosis I have lost height due to dried out disks. My nerve conduction test showed compression of nerves at L5. I'm waiting to see the neurosurgeon to see what can be done as medication and steroid injections did not work.

Sunseaandsand profile image
Sunseaandsand in reply to Collywobbles64

Thank you did you see a nuerologist to have the test done?

Years ago I had some sort of nerve test done on my legs and I saw a nuerologist for that.

Collywobbles64 profile image
Collywobbles64 in reply to Sunseaandsand

The neurologist sent me for the test as well as mri of entire spine and head. Just waiting for further appointment to discuss results and what can be done.

Collywobbles64 profile image

Looking at your comments above, I too have a constant burning sensation and some days moving is so painful I just sit.

Bombcat2015 profile image

I have a compression fracture between t4-t5 as well as scoliosis and RA in my spine. That pain you are feeling is intercostal nerve pain...I get that burning under my right rib and sometimes around my xyphoid process. I swore it was my liver for a long time but when my back is really bad it gets worse. All the damage and twisting has caused nerves to get pinched. I take gabapentin for the nerve pain and it really helps. I was on Lyrica for about a year as well, that was a little stronger but I did not like the side effects. Just a note here, once that damage occurs you will have continual won't be able to get rid of all of it. I work on my posture constantly which seems to help...the more I slouch (which is easy with a broken back) the worse the pain gets. Some days the pain is bearable, other days it's moaning in bed status. Keep moving forward my friend. Physical therapy had minimal results but did help strengthen the muscles supporting my sternum and spine. The more muscle you can build around the injury the better. I hope this helps!

Gjohnso profile image

I am sitting in my dr office with the same symptoms - including the rib burning and pain. I was going to ask him for gabapentin because hydrocodone 7.5 barely touches the pain. I also have 4 fractures.

Sunseaandsand profile image
Sunseaandsand in reply to Gjohnso

Please let me know if your doctor prescribes Gabapentin for you, and how you get on with it.

I hope you get amazing results with your new treatment Romoszumab.

You must tell everyone how you progress on it.

Thank you for replying it really does help.

Gjohnso profile image

He prescribed 300 mg(?) three times a day. My husband is at the pharmacy picking it up. I will let you know what happens when I take it.

I go in for the next Romosozumab shot in March. I haven’t felt any difference — I don’t think I’m supposed to. Right now I’m lying on my right side fighting pain.

Sunseaandsand profile image
Sunseaandsand in reply to Gjohnso

Well good luck!!

Hope you are soon feeling better.

strongmouse profile image

Hi I tried pregabalin (similar to gabapentin) for nerve / spinal pain but found that it knocked me out. The doctor then tried me on a low dose of nortypraline once at night and that really helps throughout the day without knocking me out so much.

I think you have to try one medication for a while to see if it works for you - four weeks maybe - as many of these medications have side effects or take time to really work. Try the low dose first and see of it helps.

Hope that you find what helps you.

Sunseaandsand profile image
Sunseaandsand in reply to strongmouse

Hi, and thank you for your reply.

Yes it is a case of trial and error to see which suits best.

I was told it would be a low dose that I would be given.

Have you personally had many side effects with the Nortriptyline?

Chronic constipation is a problem for me that I take meds for.

Although for the past month I have been drinking ginger tea and noticed a improvment.

strongmouse profile image
strongmouse in reply to Sunseaandsand

the nortripytaline did make sleepy the next day at first, but less so as time went on. I take it at night. The GP did offer to increase it if needed but I'd rather only increase it if I really need to. Otherwise no problem and it truly has made a difference.

I get constipation post stomach operation plus on cocodamol, but my GP prescribes Movicol which is a sachet I dissolve in water and it works very well. Normally take one every other day, but sometimes once a day. It doesn't seem to have any side effects.

Sunseaandsand profile image
Sunseaandsand in reply to strongmouse

Thanks so much for your reply.

When I was put on Oxycodone last year I was sleeping just about all day but my body really needed the rest because the pain from the fracture was excrutiating, just trying to speak hurt.

Once the fracture had healed I decided to come down off it and this was done in stages with long gaps in between.

It was not a nice experience coming off it and I only recently got off the last of it.

I do feel reluctant to take meds because I do not tolerate them very well.

But I really do need to try somthing for this under my rib.

I have been on Movicol for years and also have a tablet once a day called prucalopride these were both prescribed at different times by the hospital.

My usual dose of movicol is 2 a day, but whilst on the Oxycodone I was having 4 a day and was still unable to go.

Now I am off it and I am drinking ginger tea which has been really helful.

The consultant has just given me docusate to try instead of movicol as I was so bloated and feeling so sick I found it hard to drink movicol.

I have not tried it yet because the movicol at the lower dose does seem to be working.

I suppose you can imagine what its like trying to get 4 of those down a day!!

You will probably understand a little better now why I am concerned if Nortryptiline will have a negative effect on my bowel.

The feeling off movment and pain confuses me as I just can not understand how it would be possible for my back problems to give feelings like I am having.

It has to be either the bowel or the back that is causing it.

It does not help when the doctors conflict with each other as to what the cause is.

The only thing that stops it is to lay flat on my back.

Well I apologise for rambling on but it does help to be in contact with others.

Thanks again for listening.

Jax103 profile image

Gabapentin made me sick to my stomach. Doctors want to keep increasing the dose to 2.5 grams/day. Actually I am not an epileptic which is what this medicine is for. Low dose for neuropathy and mild nerve pain may be ok but prescribing it for pain is just a pacifier to prevent prescribing and opioid. I am very leary of off label use of any drug. If it takes 2.5 grams to be effective it cannot be very good IMO.

Dogsandme profile image

I was prescribed Gabapentin for serious arthritis of my ankle and tolerated it well. When I had my ankle replacement and the pain eased, I slowly came off it because it is /can be addictive, not as much as an opioid but addictive never the less. Please read this before you take Gabapentin. It is a bad drug, in my opinion.

I do hope you find some relief soon. Good luck.

Sunseaandsand profile image
Sunseaandsand in reply to Dogsandme

Thank you for replying, it does help to read about others experiences.

From reading about it Gabapentin does not seem to be tolerated well by many people.

Take care.

mandynelson50 profile image

HI I take Nortriptyline at night, I couldnt really comment on pain relief as such but which it does is seems to relax my symptoms enough to get me to sleep at night, otherwise i feel i lie on top of the bed rather than in it, if you know what i mean. xox worth a shot. Gabapentin didnt really do anything

Sunseaandsand profile image
Sunseaandsand in reply to mandynelson50

Thank you,

It does seem to effect so many people in different ways.

It makes me wonder if maybe this is because it's given for different types of health problems.

Gjohnso profile image

Hi. I am so sorry for your pain. I have taken both drugs but not

together. I take 300 mg of Gabapentin 4X a day and Tizanidine 2 mg with the Gabapentin. I just started on Tuesday. Gabapentin takes a while to kick on - maybe 2 weeks. The Tizanidine works after you absorb it. I increased the dose to 4 mg and my blood

pressure dropped to 91. I also have the burning rib pain, side pain and hip pain. I know how you feel.

I was in so much pain yesterday that I called the dr. He put me back on Hydrocodone that I already have in the house. I took 7.5 mg along with Gabapentin and Tizanidine. It reduced the pain to a manageable level. I took 10 mg today and my pain is GONE. Problem is I don’t think the dr will give me a new script. I live in South Florida right now.

Sunseaandsand profile image
Sunseaandsand in reply to Gjohnso


I too am sorry to hear of the pain you are in, and pleased that you have been given medication to help relieve it whilst your fractures heal.

I hope the doctor will allow you to take the medication until you feel ready come off it.

Surely he will write another script for you if it is managing your pain.

Where in your spine are the fractures, did anything happen to cause them?

Gjohnso profile image

Turns out I have 2 new fractures. L5 and a rib. He is letting me continue with opiods and ibuprofen. I have a chemical cardiac stress test Wednesday, an MRI Thursday and a bone scan Friday. I am so depressed. Nothing ever gets better. Thanks for listening. I’d like to explore natural ways to improve bone health.

Sunseaandsand profile image
Sunseaandsand in reply to Gjohnso

Sorry to hear of your 2 new fractures, am I right in thinking you now have 6 fractures?

Have you had Dexa scans in the past and do you know your T scores?

It does make the mood very low having to go for one test after another I know exactly how you are feeling.

I have to go for my Ct scan of the bowel on Thursday, a Gastrophscopy in 2 weeks time and now they want me to have a heart moniter on for 24hrs and an echcocardiogram.

I am absolutely fed up and have had a bad day today.

The best natural way to improve bone strength is weightbearing excercise, but like myself this will be out of the question for you.

Take care and good luck with all the tests.

Let me know when you hear the resultsxx

Gjohnso profile image
Gjohnso in reply to Sunseaandsand

Thanks. I haven’t had a bone scan yet so it will be interesting to get the results from this one. ... I had been doing weight bearing exercises before all this happened.

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