fraid4 months ago

That sounds horrendous,poor you.What do you mean by ‘don‘t get on with pain meds’? They all have side effects but when agony strikes you may decide pain is worse than those.I get nausea etc but could not do without Fentanyl,so take Stemetil when nausea bad.I hate taking any drugs but cannot cope with agony from multiple spinal fractures,so have to take what works. It’s a balancing act but maybe you need xray see if you have fractures elsewhere? Good luck .X

MyStar86 in reply to fraid4 months ago

well codeine makes me projectile vomit, opioids send me mental i think people are going to kill me and anything that uses serotonin can kill me as I was given serotonin poisoning by doctors previously. I ended up having to have a nerve block for my rib fractures as I could only take paracetamol. I’ve been recommended Nefopam but the gp won’t prescribe it and my rheumatologist as it’s not something he can prescribe as the guidelines say it’s for post op pain which is really annoying. Hoping to get referred to a pain clinc as I have also longterm gastric bowel issues and have had surgeries so I have to be careful what I take. It is a nightmare I do wish there was something I could take but it’s not just simple side effects these happen instantly. I have been ok with fentanyl for surgery but it’s only short acting and not something the gp would prescribe I would of thought needs the pain clinc.

Thank you for your help what is setmetil?xx

Reply (1)Report

fraid in reply to MyStar864 months ago

Oh dear,sounds like you’ve tried it all.Morphine makes me instantly chuck but if you can cope with Fentanyl,as can I ,the gp prescribes my patches though only used for chronic long term pain,so depends on your diagnosis & prognosis I guess.Hope the pain clinic can help.Stemetil is anti nausea pill.Good luck!🤞

Reply (2)Report

MyStar86 in reply to fraid4 months ago

thanks I’m going to try going private as urgent these days does not mean anything via the nhs it wouldn’t be till next year and I’m in agony so I hope someone can do something as it’s a nightmare when I can barely move xx thank you so much

Reply (3)Report

Fruitandnutcase in reply to MyStar864 months ago

Could you see a pain specialist privately? You really need to get good pain relief. I fractured my sacrum last year and the physio who diagnosed it and got me a private MRI scan when I was getting absolutely nowhere with my GP, was adamant that I absolutely had to get really good pain relief.

Like you I’m not good with pain relief and after trying a lot of things I ended up just taking paracetamol or paracetamol then ibuprofen two hours later throughout the day although I’m not keen on NSAIDs for my bones but needs must at times and that was all my body could cope with.

I also splashed out and bought a PEMF mat and it was really by using that that I was able to manage on paracetamol. That is pulsed electro magnet therapy,a mat that I lie on twice a day. I was lucky though because I’m able to lie flat on my back and none of the contraindications applied to me.

I also used a lot of rub ons - Volterol, bio freeze and the likes and ice packs or sometimes heated packs. They’re not ideal but they were useful.

Hopefully you can get the help you need.

Reply (4)Report

Merryroundabout in reply to MyStar864 months ago

I think Stemetil is anti sickness

Reply (0)Report

fraid4 months ago

insist on xray,I had to fight old doc for month for one as he insisted was from my kidney op- I had 6 verterbral fractures!! My new gp said first let’s get your pain sorted,finally!🤗

Fruitandnutcase in reply to fraid4 months ago

I know where you’re coming from - my former GP told me I couldn’t have an x Ray and that at my age 73 - the excruciating pain I was in was probably a ‘touch of osteoarthritis’, I actually had a fractured sacrum.

Reply (3)Report

Fruitandnutcase4 months ago

As an afterthought would accupuncture help? I tried it years ago - it didn’t help but even though it sounds kind of grim it doesn’t hurt and a lot of people swear by it. nhs.uk/conditions/acupuncture/

MyStar86 in reply to Fruitandnutcase4 months ago

thank you I have tired it before but I didn’t find it helpful just painful laying on the couch. But thank you for the thoughts 🥰 I’m going to look into getting a private physio as the nhs was awful wouldn’t touch me or help at all pointless stretches which I could already do. Wish I could have a good back massage I dream of those!!! I will go for a private pain clinc as I do need to get some help as I can’t even sit for more than 30 mins it’s agony even laying down hurts now so I’m exhausted from it all just need some relief as I never suffered with bsck pain but since I broke all the ribs on both sides in multiple places and have my other bowel conditions my back is trying to hold me together and it can’t. What broke me was having to be on an mri for 3 hours they did an mrcp which take ages and then a small bowel mri I was in agony strapped down I stopped the mrcp part way through as I was crying from the pain close to vomiting from the pain and I’ve been in agony sinfe it felt like my back was breaking I kept asking for padding and not to strap me so tight but it was just awful 😢 xx

Reply (1)Report

MyStar86 in reply to Fruitandnutcase4 months ago

also had a total hysterectomy not long ago this year with everything removed which took its toll on my back I was black and blue after on my back I remember they couldn’t do the spinal epidural so I had about 5 puncher wounds in my back it wasn’t good at all so probably added to my problems xx

Reply (3)Report

fraid in reply to Fruitandnutcase4 months ago

I tried acupuncture years ago,told wouldn’t feel anything but when a muscle twitched I screamed in pain! Never again!😱

Reply (1)Report

Fruitandnutcase in reply to fraid4 months ago

Yes, weird feeling when that happens - it only did it once for me. I don’t think that is meant to happen because the person doing it apologised but maybe it is. It reminded me of when you scratch a dog in one place and it’s foot ‘scratches an itch’ somewhere else. I’ve got a real aversion to needles so I can’t believe I actually did it or that I didn’t really feel the needles going in. It shows how desperate you can get doesn’t it.

Reply (1)Report

Fruitandnutcase4 months ago

Oh ((((big hugs )))) I really feel for you. I can imagine your pain and how exhausted you must be feeling, you really are needing help. It’s funny what suits some people just doesn’t suit others. I tried a TENS machine - that was useless for me too - still had all the back pain but at the same time I had a really annoying tingling in my back. Ribs are a nightmare too. You really are having a tough time. I was lucky that the people who did my MRI padded me out really well but I’ve heard of people who were really uncomfortable and like you were miserable.

Let us know how you get on.

MyStar86 in reply to Fruitandnutcase3 months ago

I have been referred privately for pain management privately by my gastro thankfully and having an ERCP to sort out my bowel issues so I’m hopeful I might get some kind of a life back yet because right now my bowel, back and pain rule my life well existence of pain so I really hope they can fix me!! Thank you for caring xx massive hugs

Reply (2)Report

Fruitandnutcase in reply to MyStar863 months ago

I do hope they can too. Good luck with it all.

Reply (1)Report

t1gernidster4 months ago

I’m so sorry for you. I cannot take most meds due to a stomach issue so I do understand. I haven’t tried it but have you considered medical cannabis? I understand it’s available now in certain circumstances. Might be worth investigating. Good luck.

MyStar86 in reply to t1gernidster4 months ago

thank you that’s very kind but considering I wanted my gp to prescribe nefopam which is a non opioid non addictive, less side effects all round Safe pain med that can be taken longterm and they said they couldn’t due to guidelines but they could give me morphine, codeine or tramadol which I find completely mad!! I think medicinal cannabis is only used to treat children with epilepsy at this current time and even they struggle to get it when it’s the only thing that helps them so I don’t think I would be able to get that in the near future worth a thought but I imagine the street stuff is easier to get hold off these days considering how hard it is to even get hold of the doctors. I’ve tried the strongest cbd and that doesn’t do anything I tried the cbd vapes etc as well but nothing like that helps me.

Ideally I want to try nefopam but even my rheumatologist said the guidelines say it’s for post op pain so he couldn’t it would need to come from pain people I guess just crazy when they can prescribe opioids but not a safe non opioid like nefopam it’s really annoyed me.

I constantly have what feels like trapped nerves in my shoulder blades that is agony I hate that part but maybe a physio could help with that as it only happened since the stupid intercostal nerve block for my ribs that messed up the nerves in my back so I would not recommend to anyone qs I ended up in a&e after mine it was a nightmare xx

Reply (2)Report

angie264 months ago

so sorry , it sounds just like me, I cannot tolerate drugs, even antibiotics, it’s a nightmare! Do get your doctor to refer you to the pain clinic, I saw a lovely doctor and managed to get some help, I said I wished there was cannabis available and she said as she was also a private doctor she could prescribe it, I am not at that stage yet but it’s nice to know there is a way round it, best of luck xx

Flowergirl244 months ago

this may sound silly, but have you tried a back brace to help whilst your sorting out your pain relief. I was in terrible pain with back injuries due to after affects from my operation and most of the damage came from steroids after developing Osteoporosis and spinal damage from T10 to L3. I have 2 back braces. When in pain, I use either one to help with my posture and seem to relive the pain by support and when using them, I’m less bent over so I feel less pressure on my back. They have made a huge difference to my life. Wishing you all the best.

Nannie-C4 months ago

I’m sorry about your pain especially at your age.

As other have said, trays or stand to see why there is pain is essential.

Has your Drs checked your parathyroid glands for faulty ones?

This is a common cause of bone pain, loss and fractures sadly often forgotten about.

You need calcium, vit d and parathyroid samples all from same blood draw to assess the relationship between them which with their levels is what leads to a diagnosis

Valerie01064 months ago

poor you. I have had horrible back pain over the past year and finally a GP sent me for xray which showed multiple fractures. I take Tramadol, but with an active fracture Valium is helpful for the associated muscle spasm. I also plan to CBD. Good luck.

FJMG4 months ago

have you tried amitriptyline? That can help or gabapentin.

MyStar86 in reply to FJMG4 months ago

yeah I tried both of those amitriptyline works via serotonin so it’s awful for me even a quarter of a pill I can’t take. Gabapentin just didn’t do anything or pregablin so I have tried a lot unfortunately that’s why I’m so scared just want someone to take it away now as I’m at the limit of what I can handle xx

Reply (1)Report

FJMG4 months ago

I've found acupuncture and laser really helpful.

Posy-White4 months ago

Hello MyStar86

Sorry you are having so many issues, one cannot think stright when in pain and the resulting lack of sleep adds to the problems.

Would patches be of any help? My rheumatologist sorted me out with Butec 10 micrograms/hour transdermal patches (changed weekly). I cannot absorb oral meds,and Morphine patches left me very scared (I thought someone was in the wardrobe waiting to stab me???).

Butec is Burenorphine which is an opiod, but they suited me. I know you cannot have them if you also have antidepressants so clearly don't suit a number of people. It might be an idea to discuss with your GP/Consultant.

I do hope you are able to get something sorted soon.

Thoughts are with you.

Posy White

jimister in reply to Posy-White3 months ago

Did you find the Butec made you vomit. I have some but been frightened to use them as any time i've been given Tramadol or Morphine i've been very sick.

Reply (0)Report

Posy-White in reply to jimister3 months ago

Hello jimister

When I had Morphine patches I did vomit but didn't have any problems with the Butec it just worked without side effects. What strength are the patches you have I was started on 5mg but Consultant was concerned at the amount of pain I still had so increased it then to 10 mg.

I just feel for you as it is such a hard thing to choose what to do.

Best Wishes

Posy White

Reply (0)Report

jimister in reply to Posy-White3 months ago

I was given the 5mg strength.

Reply (0)Report

MyStar86 in reply to Posy-White3 months ago

thank you!!! And I’m glad I’m not the only one that morphine makes them feel like that it’s a very awful drug but strange how doctors can dish it out so easily! I’m going to try and see a pain management specialist privately as my rheumatologist was too scared with all my drug reactions but my gastro as he would refer me as I clearly need specialist help. I’m giving duloxetine a try but only up to 10 granules out of a capsule as I have to build up very slowly due to the serotonin…..a doctor gave me sertraline once and just one pill had me house bound and tripping with paranoia for 3 days it was awful I thought I was going to have a heart attack I couldn’t eat or do anything without panicking then passing out. So this is a baby steps approach to build up till I can see a pain specialist as the patches sound like a good idea. I didn’t get on my hrt patches but that’s totally different so maybe the slow release aspect to them will help me and good to know you react like me to morphine and still get on with your patches. I will let you know how the duloxetine goes if I can get up to one pill. I have surgery in November so will do pain management after that as I need to sort out my bowel first as that causes me so much pain and adds to my back issues so fingers crossed.

Thank you all for your advice it’s best to hear from people who have taken these meds vs doctors just dishing them out xx

Reply (0)Report

Posy-White in reply to MyStar863 months ago

Hello MyStar86

Sorry you have also had such a tough time with pain.

I do hope you are able to find some real help from the specialist - Being able to get more than two hours sleep at night and starting to do 'nice things' without too much pain makes such a big difference to ones wellbeing!

Good luck

Posy White

Reply (1)Report

strongmouse4 months ago

I have osteoporosis. Had three infusions of zolendronic acid. I can tolerate codeine - I have a number of health issues causing pain. When my back pain flared I also had pain down me lower leg and had an MRI which showed I have a lumbar disc pressing against the nerve. (Also have osteophytes on my cervial spine). I've had physio which helped somewhat the lower back pain, plus been to Pain Management Clinic. My doctor prescribed nortryptaline, which I take at night as it makes me sleepy, and it really helps. The Pain Management was helpful in giving me 'tools' to manage alongside the pain med and physio. Helping to strengthen core muscles helps the spine, but only if they don't cause your pain to go through the roof. My physio was very good at helping me find what I could do safely. It was each of these things together which help me manage day to day.

I do use a topical gel - Deep Freeze - but mainly for hip pain.

Hope you find what helps for you.

wellness1 in reply to strongmouse4 months ago

Sorry to hear about your health challenges, strongmouse. It sounds like physio and pain meds are helping you manage your spine issues. Are the cervical osteophytes causing any pain or other symptoms for you? You don't have to elaborate if you don't wish. I have an osteophyte so I'm curious.

Reply (2)Report

strongmouse in reply to wellness14 months ago

They can do. I started getting neck pain and some numbness and tingling in certain fingers on my right hand. Referred by GP for an assessment by a specialist physio with the local Spine and Back Pain Clinic. He was brilliant and could tell where the problem was. I have problems with hand strength, and can get dizzy as well, but I have learned to turn my shoulders and upper body rather than my neck and this minimises problems. Also careful reaching up for things, as I can inadvertantly turn my neck. The MRI showed oestoephytes (boney growths) and spondyltic changes as well, with marked changes at C3-C4, and mild C5 - C6. The MRI showed that I didn't need surgery, but I have to go back if the problems get worse or becomes more extensive. Apparently they are not uncommon, and it is only when they cause a problem they need investigation.

The pain meds. also help with a problem in my hips and groin caused by another separate operation (not spinal). But the nortryptaline definitely helps with nerve pain.

Reply (1)Report

wellness1 in reply to strongmouse4 months ago

Thanks. It sounds like you're able to manage it conservatively and I hope that continues.

Reply (1)Report

unluckyalf4 months ago

Iknow its hard to convince the GP but marijuana in different forms can help quite a bit to ease the pain so i have been told.

Bluebell9993 months ago

It is a vicious circle isn't it. The pain makes you stressed and anxious which makes your muscles spasm or tighten which makes the pain worse. I really feel for you, it makes you desperate to try anything.

I had calcitonin after my spinal collapse which did help the pain that makes you scream or cry. It is a short lived solution but once I managed to get over the worst it did help me to break that cycle of pain and tolerate just paracetamol for most days.

I have bought a heat pad for my back which really does help, ice packs just tightened the muscles and increased the spasms. I also have Diazepam, (valium) when the pain is really bad and I take myself off to bed to relax. Obviously they are addictive and cannot be used too frequently but my gp limits my prescriptions and keeps track.

The Pain Clinic will also tell you about using distractions, which I must admit thought "airy fairy", as if I was imagining the pain, which I didn't take too kindly, but sometimes it does help. Ringing a friend, reading, watching a good film on tv, puzzle books or even having friends or family round, (they must make their own drinks!) can be good for your mood.

It is a really miserable time for you but over time the pain will lessen a little. I still have pain every day, some days worse than others and I am 2 years on from my collapse, but it is not the intense, tormenting pain it was. It is a very slow process and I wish you luck and relief.

lgd3333 months ago

I've only found paracetamol helps for lower back pain, but they must be the dissolvable [effervescent] tablets.

Gillymar3 months ago

you are too young to feel constant pain. I am sorry but I am 88 and get pain with osteoarthritis. I can’t give any help.

MyStar86 in reply to Gillymar3 months ago

well unfortunately I am in that much pain regardless of my age! I had osteopenia since I was 18 and osteoporosis since 2015 and only started the infusions last year so I’ve had no treatment and numerous fractures so the pain is there regardless of my age.

Reply (0)Report

nottowell3 months ago

i have been on Gabapentin and deloxetine ever since ever since a disc bullged out of my spine and pressed on a nerve as with oesteoporosis your spine compacts down. Have you had an MRI to find out whats going

MyStar86 in reply to nottowell3 months ago

hi, I know you can’t post on here directly but I am seeking private pain management in London and I wondered if anyone could message me if they could recommend anyone specifically? I am going to ask my gp today about Duloxetine as I’ve tried gabapentin loads of times and jt never helped me so that one is out and pregablin that never helped either just made my bowel issues worse. Really was hoping to try the nefopam but it seems I will need to go to a pain management specialist for them to prescribe which seems crazy given it’s not an opioid and low risk and not addictive I just don’t get it. Will see what the gp says today re Duloxetine as I will only need a tiny dose as I am not very good with anything that works via serotonin so I will need to be very careful. Hopefully the pain management can look into why my back is so acutely painful now however to me it feels like trapped nerves as it hurts so much to sit down I just to put a hand behind each shoulder blade to pull it away from my spine…..very weird but so painful when I can’t even sit without being close to tears xx

Reply (1)Report

wellness13 months ago

I'm sorry for everything you've been through and for the unrelenting pain you're experiencing. I'd never heard of Nefopam, but you got me curious. It seems it's not exclusively for post-op pain. I found a document from the Sunderland CCG (Removal of Nefopam from Formulary 2016). It may shed some light on why some doctors don't prescribe it, if you want to search it.

Since you asked for alternatives to opiods... There are lidocaine patches and I've heard that neuropathic pain may respond to to them. Have you ever heard of Low Dose Naltrexone? Naltrexone is used in drug and alcphol addiction, but it's being used off-label in low doses for multiple conditions, like MS, Crohne's disease, fibromyalgia, cancer and pain relief. The LDN Trust is a good source of information if you think you might want to learn more. It's thought to have fewer side effects than some traditional pain meds. Ideally you want to treat the cause of the pain. But anything you can do to make yourself more comfortable and dampen the pain pathways is useful, even if it's temporary relief. The way that our tissues respond to pain (muscle and fascia tightness, for example) can mean that acupuncture or massage/ myofascial release might be helpful. I honestly think however, that you have to find someone who really knows what they're doing and can work with someone with your conditions. Maybe you can get a recommendation for someone in your area or a pain mangement clinic if you go that route. Pain is very fatiguing, as you know. Anything that will help you sleep better would also help. Melatonin is one possibility. Even if it doesn't help with pain, CBD oil can help with sleep, but I gather you tried it. I hope you find something that will help you.