I am new hear and just as new at this kind of social interaction. 49 years ago I Had a 40ft fall aged 15 with dislocated and fractured lumbar vertebra that naturally fused at the time, have had many and varying nerve and muscle pain over the years it is often very annoying when one tells someone about neuropathic pain they say they understand yet their eyes tell a different story. because it is real I know any thoughts
Maxv
Welcome MaV4life, I hope you enjoy this social interaction. For many with pain who can't get out in person to spend time with people, the internet is a life saver!
I am sorry to hear about your accident and the subsequent pain. Looking at the scan (assuming it is yours) you must have spend a lot of time in pain. You didn't mention what treatment or support you have had for the pain? My son is on amitriptyline for his neuropathic pain and it really helped him with his sleep, although it seems it isn't working for the sleep anymore, although the neuropathic pain hasn't come back.
Hi cyberbarn yes it is me only got it couple of days ago was looking for 2011 xray for comparison with today 2011 is a year to long ago, I got lucky kind of as i broke my ribs 2015 and it covered my back as well result its been a head trip working out how to work program but its amazing what it dose, I was hospital for 12 weeks first 9 on povey frame and great nursing, then plaster jacket followed by a corset was 15 in Royal Air Force hospital abroad, cant say it was an unhappy time or even boring so much going on with the Squadies and Airmen have many fond memories, worst bit was i lost 2 inches in height at the time and stopped growing, had back ache ever since really mostly muscular with intermittent nerve that must of been a bit as i think i am short of pain signals these days,
Take co codamol regularly for years now and had amitriptiline for a while but didn't t like the side affect so managed without it, clothing is biggest prob always wear braces to keep trousers of waist, wrong underpants can be a nightmare pain wise its been so long i am sure i have diffrent pain brain responses to the rest of the world.
Your son has problem what caused it? how old is he,? do you have prob as well? If you have not had a C.T. scan then harass them for one, they are informative.
Sleep have you you tried meditation internal focus relaxation, I was told at the time keep mobile what ever mobility I obtain will be earned so own it.
Hope Things are not to bad for you and your lad, I remember having to get my socks put on for me, God I was just very lucky, would like a bit more detail if ok with you.
Peace and Tranquility to you and yours Max XXX
It sounds like you have had a real adventure with your life! My son and I have Ehlers-Danlos which is a connective tissue condition. He has it worse than me. Amitriptyline is pretty good as drugs go, but like all drugs there is a Number Needed to Treat. Have you heard of them? The NNT for Ami is about 4, that means for one person to get benefit four people have to try it. and NNT of 4 is pretty good, some things like some statins have an NNT of over 200!
My son has various methods of dealing with the pain, discomfort and fatigue that he struggles with, and one of them is his version of medication. I use a lot of distraction myself. The box set of the comedy Green Wing saw me through post surgery pain when I had foot surgery.
Hi cyberbarn
Adventure Misadventure I guess I believe all things in life are worth trying in search of enlightenment. I have always thought that the I dear of an illness causing back problems a more frightening thing mine broken but fixed in the moment with slow changes but the through on gong ailment much harder to deal with the uncertainty. I guess your lad may be a herbalist have done plenty self medication myself, Something do work but usually at a price which seems to be common to all medication always a cost to function with the relief.
Hope the foot is recovered not to sure what the affect of Ehlers-Danlos are I will have to Google
Peace and Tranquility MaxVxxx
Stop trying to get people to understand they cannot. People understand things within their experience. The people on this forum know about long term pain and what it does. You will find hopefully the understanding here.
Alexander technique, McTimony chiropractor and other muscle control disciplines are useful for helping with pain. Drugs cannot lengthen over contracted muscles. You need manual therapies for this.
Wow that does look bad. Its not surprising it is causing pain. Having had it for so long I have to say I take my hat of to you. I have been n pain for over 3 years now with leg nerve and back pain now and feel its been a long time. 49 years is just so long. Strangely enough you do kind of get used to it and unfortunately learn to live with it.
I could not stand amitriptyline and as gabapentin did not agree with my eyesight I settled on pregabalin for the nerve pain and tramadol for the back pain which is doing the trick so far.
As John said though don't try to get other people to understand your pain level. I kind of say its still hurting but no more as people prefer to talk about other things including myself really.
Also agree with John on the alexander technique. I have had about 7 sessions so far and feel it really helps me, do however search for a really good one as they vary tremendously.
I do various other things like oscilation therapy and myofascial therapy and physio. Out of those three maybe oscilation therapy might help you?
Hi Emma Thanks X
How did you get the back pain, it is something that people hear will listen to,
Would love you to share, so don,t hold back, its comforting to be heard and believed
bet you are a great listener. Be Heard,
Love and peace MaxV XXX
My disc herniated suddenly after having had some back ache for a few months. It was a huge herniation and I was having slow onset cauda equine. Had operation and was left with a gammy leg. Took ages to get the feeling back in it. Things were looking up when it went again which meant another op. The second op went well and I felt quite good after when all of a sudden 2 weeks later I had exploding bad pain. You guess it exceedingly bad herniation and op 3. I am now getting better but my back hurts quite a bit and the nerve pain in my leg is annoyingly bad at times and passable at other times. You have coped for so long with your predicament, I feel these last 3 years have been awful but it pails into insignificance next to your 49 years. Pain nonetheless is hard to deal with wether 1 or multiple years. Having had it for 3 years has made me cope with it but it’s still yuk. Xx
Hi Emma that sound really worrying such an on gong and painful condition and you are quite right about the assessor that was meant to be a doctor. what a joke he is there is no excuse for lies and thats what he did. I have made every complaint i could find at the moment am waiting to hear what they say, never eve excepted i have osteoarthritis in both hands though i have been informed it is obvious to see.
I hope your problems calm down bit of an endurance test it seems
Peace and blessings to you Max xxx
Glad you’re here max. Grateful for your post & this discussion. I’m Hypermobile Ehlers Danlos too (also infant onset lupus + a bone marrow malfunction disease (CVID) which makes me at high risk of infections. All of this has given me early onset progressive multisystem neuropathic & vascular pain.
Both my cervical & lumbar spine were injured quite badly growing up. Alexander has been key for me (am 65 now and started Alexander in my 20s) alongside a few other body therapies. So, my whole life has involved managing multisystem neuropathic pain with as few prescrip meds as poss
Now my lumbar scoliosis imaging looks quite a lot like yours. I’m actually in 3rd month of recovery after L4/5 posterior instrumented fusion + foraminotomy (the scoliosis had worsened alongside my osteoporosis so my L4 nerve root had become severely entraped...i have grade 2 fractures L1,2,5).
Recovery from this surgery has been interesting cause i’ve become hyperreactive to all prescrip analgesics which means i’ve had to recover without anything but my lupus meds (prednisolone, hydroxychloroquine, amitriptyline) + CVID meds (IVIG with hydricortisone premeds, antibiotics) + paracetamol, 10% NSAID gel and everything i’ve learned over the decades about self help especially meditation & body therapies. My medics are amazed at how well i’m doing....but for me this is just more of what i’ve had to bear all my life
I agree with the others: only fellow sufferers really can understand...and even then there are differences due to the various ways people perceive & bear pain. But i am v much relating to your post & this discussion, so thanks!
Good luck, Take Care, Coco
Your story is amazing too and is an attribute to your strength of coping. Hope your recovery of your latest op will continue as well as can be expected. 🤞🏻
I ended up with severe bone loss due to a doctor not addressing hyperparathyroidism and let the condition deteriorate for over 6 years. Of course I wasn't aware of most of This until the damage was done. This caused my first spinal compression fracture in 2008 spontaneously. From there it was a domino effect. When I went to my ob/gyn for annual exam they always check height. In stead of being 5'7" I measured 5'3". Upon multiple CT/MRI of thoracic and lumbar areas it's noted I have many compression fractures from T5 through L3 as well as scoliosis due to bone loss. Any surgery for them is not possible as there is not enough bone density. I was diagnosed with Polycystic Kidney Disease along with high blood pressure, chronic kidney disease at age 21. At age 43 I began dialysis. This has allowed me to continue living but included 22 major surgeries including having both diseased kidneys removed, approximately 80 procedures. I've now been on dialysis now for 18 years. I also have neuropathy, insomnia, chronic anemia and low iron stores (comes with kidney disease), diabetes for 20 years well controlled for over 10 years with no meds at all, chronic low bp, multiple other fractures like leg, arm etc and survived seven (7) episodes of SEPSIS each requiring weeks in hospital powerful meds learning to walk again and other complications. This also caused Septic Shock and Post Sepsis Syndrome.
I am so blessed to still be here today. We have 5 grown kids and 10 grandchildren along with 7 canine 3 feline kiddos to love on. I do LOTS of volunteering for Kidney advocacy on several boards, committees, ambassadorships and a certified kidney health coach. There have been struggles. I don't really consider myself a survivor rather an OVERCOMER. Life is all about what we choose to do with what we have. I am the luckiest woman ever to have my best friend and love of my life as my husband. We soon will celebrate 37 years marriage. I have so much left to accomplish. Blessings
Hi if you have had scan have you got hold of a copy amazing do it,
I have to say survival is a state of mind a choice we make in our approach to life
Congratulations Max
Hi all well that was a great surprise at just how much my thoughts meant and glad to read all the input i guess one of the strange thing for me over the year, was realizing that everyone dose not hurt and its not normal to feel like this, I just thought it was normal for the world, not sure i feel like its pain all the time its just the desire not to move and to lay down.
I recently had to have UC medical as carpentry has become to hard on the hands so saw the Dr that led to diagnosis of Osteoarthritis, Reynaurds, And a bit of carpel tunnel thrown in, Thought lfe was feeling difficult. and my back is less stable since i broke my ribs and punctured my Lungs, I was stunned at the mans insulting ineptitude as this assessor declared i have no spinal abnormalities and my spinal curves are normal. really , he did. He also declared my R.O.M Flexion values and hand grip power with all the rest of that stuff ( I HAVE THE BODY OF AN UNINJURED MATURATE YOUNG ADULT MALE ) That will teach him not to lie about doing examination. I have expressed my disappointment at not having the prescribed body. The hand problems and Reynaurds meant i saw occupational nurse up hospital who was very concerned about my mental health, as she could not find any records to support my having broken back, that led to me looking for info (records were really great and so Quick and Helpful) they dug up scan for ribs and lung damage, Result it had my back on it, all that generally led to me doing this online thing a complete first for me I would just like to express my appreciation to all for welcoming understanding. THANK YOU
Peace and Tranquility Max XXX
P.S. A funny discovery that must of confused many over the years. I have always known that I dislocated lower 3 cracked 3rd in 3 places compression fracture between 3rd and 4th along the way i found out hips join at the 5th, in my mind i have never understood how the hips connected all those years i have just found out that lumbar spine
vertebrata count down not up, I would of thought i would of found out sooner Made me smile
Be mello Max xxx
Well anybody with half a brain can see that the scan of your spine is definitely not normal. The assessor must be very ‘special’ and should possibly look for another job more suited to his capabilities.
Hi there, I fully understand where you are coming from, I was being treated for something ,(complex regional pain syndrome) that I didn't have 20yrs 😭no but joking aside it isn't funny what we all have to go through chronic pain is not nice but some how we learn to live with it even though it is invisible on the outside to people,all I can say is keep going and try not to get down .
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