Severe back pain again....any help or tips please

[Bluemoon1]

Please could someone help with some advice or tips.
I have extremely severe back pain which seems to have gotten worse in the last 5 years. Last year I had to go to out of hours at the hospital because I was crying in agony and the consultant said that another disc had prolapsed.

I think there is one at lumbar 5 (bra strap region) and the recent one lower back just above my bum.
I cant work out which is worse....although the upper comes and goes and is more bearable whilst when the lower back pain is at its worst it is absolutely horrendous. It almost feels like soneone sticking a very large needle in your back.

It makes me so depressed and when it is at its worst I can hardly move.
I am on a lot of medication which I take regularly, the GP has just increased the Gapapentin to 600mg per day, I also take Naproxen 1000mg per day and I top up with paracetamol.
When it 'goes' which means it gets very, very severe which happens approx 3 or 4x every year and lasts anything up to 5 weeks but seem to be increasing in frequency, I also get sharp shooting pain up and down my legs and back and it is usually the lower back that is the most painful.

Anyone have any idea what the heck is going on with my body? (I also have a slight prolapse of uterus which is not at the operable stage?)

I am so fed up.... does anyone have any tips or advice please. I need to go to the walk in physio that my GP has given me details of, but the pain is so bad that I can not tolerate any worse and I am so scared.
The pain today has me in floods of tears.

What a year.

[Moreisnnogedag]

Do you have pain up and down both legs or one? I take it you've had an MRI - have your symptoms changed since the last one?

Essentially you need to see a spinal surgeon then pain team. Some disk prolapsed are amenable to surgery, others injections. Do you have diazepam? Some of this sounds like muscle spasm and diazepam can help.

[Bluemoon1]

It's mostly down the left leg and it's more a sort of numbness with the occasional shooting pain rather than the type of unbearable pain that I get in my back. The leg thing also only seems to happen when the pain is extremely severe so not all the time.
I had a MRI about 8 or 9 years ago which diagnosed a "partial bulging disc" but the consultant said it is common for it to "slip in and out"..... she insisted there was nothing she could do besides medication.
Fast forward and it's getting worse and worse all the time.
When I had to call the GP to my home a few years ago I was given diazepam and co-dyramol because the GP said that it was in "spasm", but a day later I had an horrific allergic reaction. I was plastered in a hideous rash and my face started to get inflamed so I had to go to hospital and have high doses of antihistamines and adrenaline.
I had to immediately come off the diazepam and co-dyramol because I was told they were the cause. So now I can only take Naproxen and paracetamol.
I have asked GP for another referal, but he seemed reluctant to do so.

[dissapointedafternoon]

Have you got diazepam?
It really helps my husband who has prolapsed disks when he has a flair up.
I'm on 1200 mg x 3 per day due to neuropathic pain in my back. Sometimes I wish I had a smashed bone so I was taken more seriously. It is very hard to get a doctor to treat and understand pain and they are always reluctant to prescribe diazepam which always helps my husband.

[Bluemoon1]

@disapointed
Thank you for your advice......but as I said in my post above. I had a serious allergic reaction to diazepam or co-dyramol (they are not sure which) so I am not allowed to take them anymore.
Seriously horrible situation because all I can take is gabapentin and naproxen with top ups of paracetamol which doesn't touch the pain when it's really bad

[dissapointedafternoon]

Have you asked for IV paracetamol? It's a very very very good painkiller so much better then oral.
Are you taking omeoprazole to protect your stomach whilst on naproxen?
You poor poor thing

[Bluemoon1]

Can you be given IV outside of the hospital? Yes I am on 20mg of Omeprazole. Dreadful acid reflux and stomach problems without it. I am worried about the long term affects of taking NSAID's for years and years, but what is the alternative? I can not win.

[dissapointedafternoon]

I'm glad you're taking omeoprazole.

Some paramedics but not technicians can come to the house an administer IV medication for you. I had this twice in the last week and I am so glad as I am utterly exhausted and over emotional about my back pain too.
I have nerve damage so the pain we have may be simmilar.
If you ring 111 and explain you can't walk and you are screaming in pain they may be able to send someone out and fairly rapidly too. People are going to slaughter me for saying this but unless you've been there you don't know how much the pain means you are literally bed bound and depressed, it keeps you out of hospital and you can stay at home with your partner/ children

[dissapointedafternoon]

Btw I had IV morphine and paracetamol

[Roystonv]

In addition to naproxen and gabapentin i have also been prescribed tramadol and oramorph the latter there for emergencies only. Ask to be referred to the pain clinic and nhs physiotherapy.

[MountainDweller]

I have this problem though at the moment it’s more stable than yours. A good physiotherapist is helping. I am on pregabalin which is a similar drug to gabapentin but newer, plus anti-inflamatories, Xanax and opiates. Have you tried other opiates apart from the co-drydamol? Codeine, morphine, oxycodone? There are other muscle relaxants you could try too. It is a shame they have written off these types of drugs completely as they help a lot with the pain, though they won’t cure the problem. They don’t even know which one caused the allergic reaction If they kept you in for a day while they tried something at a low dose you’d be in the right place if you had a reaction.

[Bluemoon1]

@disapointed I wasn't aware of that. I thought that if you call 111 or any of the emergency or helpline numbers you would end up in hospital! Although sometimes when the pain is so bad that I can barely move that would actually be quite good because at least then I would get appropriate treatment.
When i have needed to call out of hours, a few years ago the GP came to the house and gave me oral meds.
All the GP does when I go back and forth is prescribe or change meds
When I go back next I am going to demand to be refered to a consultant. I've had enough.
You are so right, no-one understands at all what the pain is like. It's absolutely off the scale. I think that people who don't experience that type or level of pain don't have a clue how bad it is.
The only thing I can liken it to is a hot poker or a large thick needle being stuck into multiple locations..... I think that GP's etc think that i am exaggerating sometimes.
If only they could see me crawling to the toilet because I can not straighten up or stand. Then they would realise how awful it is.

@Mountain i wish that they would give me something stronger or opiates.....there isn't 1 day where the I am pain free and it's exhausting all the time.
I have been given info for physio but it's so painful at the moment and I don't want it to get any worse.
Thank you for your useful info and suggestions.

[Bluemoon1]

@mountain it was either diazepam or co-dyramol that caused it although then they changed it to co-codamol and the same thing happened so I can't take codeine or diazepam just in case. It is shit.

[Bluemoon1]

Sorry forgot to say thank you to @Royston as well. How do you get referred to pain clinic Please?

[dissapointedafternoon]

I really would encourage you to call them and see if they can come over tonight.
Best of luck xx

[annandale]

I would definitely contact the physio asap though tbh I tend to go private for physio (lucky to be able to ) so they have more time. Ask around for recommendations based on back pain. Dh eventually had a spinal rehab physiotherapy course and it has changed his life. He has a daily and weekly exercise regime for his back and hasn't had a really bad flare up for years [touches wood]

[Ollivander84]

You need another MRI. Some physios can refer for them if your GP isn't that way inclined. I went that way as I had sciatica for years, physio referred me. Luckily as I needed surgery and it turned into an emergency 48hrs before my op date
I can empathise completely, I told a&e I was going to cut my leg off because I couldn't cope with the pain any longer. They gave me morphine on top of my other drugs which did help
If you get any saddle area numbness, so bum/genitals or struggle going to the toilet or get an altered sensation when wiping, become incontinent or feel like you've wet yourself then a&e IMMEDIATELY

[Ollivander84]

Oh and thermacare lower hip and back wraps. They cover your whole lower back, fasten at the front and get properly warm for ages. They honestly kept me sane

[Bluemoon1]

I already use the heat patches.....they are amazing; a lifesaver like little hot water bottles! I already have some mild incontence of urine and leakage. I thought that this was partially due to the prolapse of uterus though (It can feel it, a bulge, just slightly inside and it gets 'heavier' when my menstrual cycle is due - sorry TMI)

[Ollivander84]

Do you have another GP you can see? I would make an appointment and make sure to really mention the incontinence

[Bluemoon1]

I will be brave and go to physio this week. I can't go on like this any longer. I'm always on edge and 'careful' because I am scared and wondering when it's going to 'go' again

[Bluemoon1]

I think I am going to start with the physio tbh. Maybe I can get them to refer and to get another MRI. They have more time and expertise in these areas than the GP.
@olliv Do you mind me asking why your case became an emergency before your scheduled operation? What happened.
I feel like I am not being firm enough and also managing the pain is going to take more than just meds.

[LondonLassInTheCountry]

Not with a back problem but with pain.
My partner is on
900mg gabapentin 4 times a day....
500mg Naproxen twice a day.
10ml of Oral morphine every 2 -4 hours and 80mg morphine tablets.
His srill in pain. Its a hell of alot and i wouldnt recommened taking this amount to anyone.

But there is more they can do for you im sure

[Ollivander84]

I had a massive herniation of my disc (around 15mm) and it was tenting the outer bit of my spinal cord. Started impinging the nerves and then developed into cauda equina. I was completely numb by that point and unable to do a straight leg raise (as in I was telling my leg to move and it wouldn't)
They did a second MRI, by that time it was about 16hrs until my planned op date so they just shifted me to first on the list. Took them 5hrs op time as it was so tight in my back

[RaindropsAndSparkles]

I have found you have to be quite firm to get a referral. I have two, degenerated disks low down that gave me jip for years. When I broke my foot I self referred to a physio who also specialised in Pilates. She gave me a complete overhaul - posture, orthotics and did 1:1 Pilates with me for a couple of months. And then bang, I fell and wedge fractured L1 badly, more than 50%. GP response was if it hurts in ten weeks I'll refer you. So I asked how long a referral would take and it was evidently about ten weeks. I pointed out that I worked full time and planned to work for another ten years at least and the NHS was better off the longer I did work. She referred albeit with a cats bum face. In fact I saw a brilliant neuroligist two weeks later and had an MRI within the week. The break was pretty ad but pain was resolving. She gave great advice and got ne plugged into the best rheumatologist in area for my osteoporosis. She also said if ever a hint of incontinence bladder it bowel to get right back to her

I recovered quickly and well although do have to take care and swear this was partly due to the Pilates exercises I had been doing. My other back problems have resolved massively since sorting my core and spending a few minutes a day exercising.

Second heat pads, physio massage (the NHS one did that), naproxen and also posture and orthotics.

I hope you get this resolved soon and do be firm with the GP.

[Bluemoon1]

Ohhh my goodness that sounds awful. Poor you...how was the recovery after the op? Do you have any pain or meds or reoccurance now? Any more issues with incontinence or bowels etc due to nerve damage?