9 years of undiagnosed lower back pain - aged... - Pain Concern

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9 years of undiagnosed lower back pain - aged 27.

Unicorn_24 profile image
20 Replies

I've had horrendous lower back pain for around 9 years now, following an active lifestyle of competitive sport involving a few broken bones including cocyx. I've seen 14 types of chiropractors/accupuncturists/the lot. Been through the NHS twice, with an MRI showing nothing but a slightly slipped disc which couldn't be the cause of all my pain. I've tried Pilates, but found that most moves 'for back pain sufferers' are completely impossible. I don't sleep well, I'm terrified of living the rest of my life with this awful pain (I can't bend down or sneeze without bracing myself) and I've been unable to lie flat on my back for 9 years).

I'm only 27, and am otherwise healthy and in good shape, but I feel completely alone in this with nobody to compare symptoms too as it's an undiagnosed problem.

Just had to share. Thank you for reading and for any advice you can offer at all.

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Unicorn_24 profile image
Unicorn_24
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20 Replies

Hi, Sorry to hear you are also in a lot of pain. Not sure I will be of much help, but I sleep on a heating pad for my low back pain. I have some discs slipping forward and some backward, degenerative and herniated disc too. I have osteoarthritis and turning 65 Jan 1. My neck is also bad, as is both knees. I had a total knee replacement on one knee last April, which is still incredibly sore. Im in pain every day and I go to P.T. and a Chiropractor. Ive just had dry needle, triggerpoint injections in my neck, which helped a lot, from my physical therapist.. I cant imagine living like this for years. I have a metal plate over L3-L5 and a fusion at C7, so they cant do traction. Ive seen those devices that allow you to hang upside down that might bring some relief. Im trying to walk 2 miles a couple times a week, but it is hard. I also had my chiropractor make me a pair of shoe inserts for posture, which cost 400.00, but straighten my balance out. God Bless! I hope you find some relief. Its hell to live like this. Judy

Unicorn_24 profile image
Unicorn_24 in reply to

Thank you for your comment Judy, and so sorry to hear of your pain. A heating pad on the bed sounds like a great idea - it's my go-to in the evenings when I need something to help.

Lolarufus123 profile image
Lolarufus123

Hi Unicorn 24 I am sorry to hear youare in so much pain. I am wondering how and when you broke your coccyx. I can't think of any other reason why you would have such severe lower back pain. Especially when you say you can't lay on you're back. I am wondering if it didn't heal properly. I broke my sacrum in October 2017 and my neurosurgeon said it's healed badly. I get severe nerve pain in my lower buttocks, thighs and left hip and like you I wonder if it will ever go away. Have you tried a pain clinic? Sorry but that's the only thing I can suggest. I wish you all the best. Lola

Unicorn_24 profile image
Unicorn_24 in reply to Lolarufus123

Thank you for your reply - I agree that maybe it didn't heal properly. I also get pain in my hips, thighs and my glutes, and I know it's all connected to my back pain. I will look into a pain clinic!

Sorry for your pain, so severe, and so young too. It's just not fair.

I'm thinking those broken bones, especially the cocyx, need looking into again. If you saw an Orthopaedic Consultant in the last 12 months you could phone his /her secretary and ask to be seen again in clinic because you are in so much pain - something's not right.

If you haven't been seen by a Specialist for more than 12 months I think you would need to go to your doctor to ask for a new referal.

You are still suffering severe symptoms - I'd keep pestering GP.

There is also A&E if pain very severe.

Unicorn_24 profile image
Unicorn_24 in reply to Mary-intussuception

Thank you, you're right. I'm going to go back to the doctor and ask for more help (maybe even another MRI to see if anything has changed as it's been a few years since the last one). I think I may have been 22/23 when they discharged me from the system with a small leaflet on 'living with back pain' - I wish I'd fought more!

Mary-intussuception profile image
Mary-intussuception in reply to Unicorn_24

Is there anyone you could take to the doctors with you? A family member or friend for a bit of moral support?

I would keep going back to GPs till they refer you !

x

deejames profile image
deejames

Hi Unicorn 24. Sorry to hear about the amount of pain you are experiencing. Clearly there is a problem. I woukd go back to your GP and ask for further investigation to see whether there are undiagnosed issues from previous injuries. Referral to a pain clinic will also be helpful as they can help with medication and self help techniques to manage pain.

Accept for the moment that lying on your back is difficult and try a side posture with a pillow between your knees. Or you could put pillows behind your knees whilst lying on your back. This takes pressure off the lower spine.

I use a Tens machine to good effect on my lumber spine. It's worth trying and persisting with. It can take a while to get the settings correct.

I am a great believer in icing to reduce inflammation. 15 mins on and 45 off. Frozen peas will do but make sure to wrap in a tea towel or tee shirt.

All the best

Dee

Unicorn_24 profile image
Unicorn_24 in reply to deejames

Thank you for your helpful suggestions Dee! I sleep curled up on my side every night. Rolling over to face the other side wakes me up but the pillow between the knees still helps.

Coastwalker profile image
Coastwalker

My lower back pain was down to vitamin D deficiency, my lower back pain, hip pain, leg pain, stiffness when getting up out of bed or chairs and more was down to not having enough vitamin D3. All pains and stiffness went almost overnight. Not saying it works for all, but an idea to rule out low or deficient vitamin D. Be aware NHS vitamin D levels are a little outdated, so many with low or deficient vitamin d patients might get over looked. I rely on advice from vitamindcouncil.com for top advice and supplementing high, but safe doses of vitamin D.

johnsmith profile image
johnsmith

You say: " Been through the NHS twice, with an MRI showing nothing but a slightly slipped disc which couldn't be the cause of all my pain". Actually it could. Slipped disc and pain could be very minor. Body muscle and posture adaptation to slipped disc could be major pain problems.

See an Alexander Technique teacher for help with possible posture and faulty muscle issues. Google "Thomas Myers". He has a number of interesting things to say which you may find helpful.

You say: " following an active lifestyle of competitive sport involving a few broken bones including coccyx". You may have muscle micro cramps which contribute to your pain issues. I broke my wrist a number of years ago. Broken bone was not problematic. Muscle pain and getting muscles functioning again without being painful was problematic. Fortunately for me I had help from a physio who trained in Czechoslovakia. The training she had looked at the whole body functioning in comparison to the UK NHS physio of one size fits all. The physio also has training in the techniques advocated by Thomas Myers. The loss of strength in my fingers was fixed by a McTimony chiropractor who showed me that I had muscle cramping on tendon sheaths. The McTimony chiropractor removed the muscle cramping and the strength in my fingers improved greatly.

My experience may or may not be relevant to you. This is for you to investigate how applicable it is to your situation.

Unicorn_24 profile image
Unicorn_24 in reply to johnsmith

Thank you, that's very interesting. I will look into an Alexander Technique teacher. Tried McTimony a long time ago and found it did nothing, but my back problems were fairly minor back then compared to now. Knowing wherr to go next is hard for me - a physio, Chiro, osteopath, accupuncurist... Etc...

johnsmith profile image
johnsmith in reply to Unicorn_24

I find I need McTimony plus a number of other disciplines working together in parallel. ALexander Technique by itself did not work. McTimony Chiropractic is once every six weeks. It is not a cure there is no cure for what I have. There is only help to keep the side effects of what I have lower than what it would otherwise be.

I engage in Meditation, Mindfulness, T'ai Chi, Alexander Technique and McTimony chiropractic. Each discipline covers things that the other misses out on. I find that I need all six. I have extended discs in the neck with nerve impingement. I cannot remove the nerve impingement. All I can do is keep the impingement as low as possible. This involves a lot of mental work which can be very tiring. And of course there is the sleep disruption and days where I do not function much at all.

RxMan profile image
RxMan

Hi U24..

I feel for you, bud. I have multiple spine issues. Including 20 bulging, herniated, or severely herniated discs (4 lumbar discs are extruded..the worst). Add in scoliosis and kyphosis and I have severe, chronic pain. My vitamin D level is fine, plus I take a supplement. I've done extended physical therapy, traction, massage, dry needling, heat, cold, and am currently seeing a chiropractor. In a retired pharmacist and this is very frustrating. I take limited doses of opioids daily, plus muscle relaxers...I've tried everything. I may have to look into regional nerve blocks to deaden the nerves causing pain. I've tried Pain Management for 5 years, with not much help. It sucks. I am also looking into getting an implanted pain pump that pumps tiny doses of narcotic directly into my spinal canal, around the clock. The benefit is pain control with very few, I'd any, side effects (a daily dose of morphine this way only requires 1 to 4 mg a day !!!l). No high, no constipation, good pain control.

I AM going to try acupuncture soon. The pain is relentless. I must move to a senior living apartment, probably will have to give up my beloved dog of 11 years. I cannot walk him, as I must use a cane now.

I'm so very sorry for you. If I can be of any help, or if you'd just like to talk, perhaps we could email or text. Not sure if that's allowed.

Take care. . We understand your pain and frustration.

Tim (Chicago area, US)

Unicorn_24 profile image
Unicorn_24 in reply to RxMan

Sounds awful - you've tried so many different things, too. Try the accupuncture - it's quite satisfying when the needle goes into a spasming muscle (I mean it hurts, but you know that it must be in the right place!) Let me know if you get a pain pump - I'm sure that would definitely help.

I see you're from the Chicago area - I visited for the first time last September and thought it was awesome!! :)

Unicorn_24 profile image
Unicorn_24

Oh my goodness. I went to the doctor's today to ask to be referred to someone who can help me, and the doctor noted that I have mild scoliosis. It's just a small part of the problem, but FINALLY a kind of diagnosis after all these years. Don't know how to feel - horrified at everything I've probably done to make it worse but so relieved that I can use an official word to describe what's happening.

ReccyMech profile image
ReccyMech

GP for a referral to the pain management clinic at the hospital, some people are lucky to get a referral to a private hospital on the NHS. This is for urgent cases, but you must insist your GP makes an urgent case of you.

GreenHunter profile image
GreenHunter

Hi there, I damaged my back whilst serving in the Royal Marines at the age of 24. This was back in 1987. I damaged my lower back in basic training and a couple of years later again when I fell from the roof of a house. Not whilst carrying out a burglary, but training for an operation in Iraq. It never stopped hurting from the initial injury and progressively worsened as the years went by. Not being helped by carrying excessively heavy weight upon my already damaged spine. I received virtually no treatment whilst in the forces and ultimately it all came crashing down whilst mountain training in Scotland for my senior command course. I couldn’t walk and was sent to see a civilian GP as there wasn’t a Royal Navy Doctor on camp. I had 2 x herniated discs in my neck. One of which was in danger of severing my spinal chord. I was rushed into hospital and had emergency surgery to remove this disk. I was supposed to return two months later to have a second removed. Which I ultimately didn’t as it wasn’t life threatening. The strange thing is. I had very little pain in my neck and excruciating pain at the base of my spine. My lower back was MRI scanned & they said I had 4 x worn discs. Arthritis, spondylitis & narrowing of the disc space. I have never been able to see how my neck was life threatening but hurt very little and my lower back has almost driven me insane. It cost me my career in the Marines. What I’m trying to say here I think in my long winded way is that Doctors still cannot fix back injuries even in today’s age with the wonders of modern science. I am now 56 years old and don’t sleep much. I continue to go to hospital and take the following meds. Oxynorm, OxyContin, Amitryptelene, Nefoam and Paracetamol, I use lidocaine medicated plasters also to help with pain but still suffer every day with none stop pain. In the hope one day they will fix me. Let’s cross our fingers eh. Because without hope there is nothing. Good luck

gamesamui profile image
gamesamui

Hello, I feel for you, as not that different to myself, I used to do moto x riding in my local hills with my mates, every weekend. Lots of bumps, few bad bangs and one real nasty jump error. I ended up flying through the air, 20ft up, then landing directly on my head, with helmet, neck clicked, knocked out for ten to twenty minutes. Anyhow, terrible for few weeks but ended up working as tree surgeon/ climber for another 12 years, then one day I had terrible arm pain. I have been in chronic pain since , that was seven years ago. Tried everything like you have, they said I shouldn't be in so much pain, many, many times.

But we are, pills and totally changed lifestyles. Have you tried trigger point therapy, where they first line your hips level, by different simple exercises. Plus they can feel your spine troubles by touch, better than any medical profffesional I've seen do far.

Hope this might help even a bit. It's not nice not having a diagnosis, they're scared to get it wrong I think. Diagnosed or not it's still the pain that is the main issue. I totally understand.

roseerj profile image
roseerj in reply to gamesamui

Thankyou

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