Back pain for over 2 years, no diagnosis

Posted , 7 users are following.

Kind of a long story, and starting to feel a bit out of options, so figured writing it all down and getting some opinions from people who have suffered similar could be of.   Not expecting anyong to read this whole thing, but it has helped to write  it down,as there are lots of things i forget.

I am 24.

About 26 months ago (December 2013), i bent over to pick up a shovel, stood up and took a couple of steps when my back gave me a massive jolt of pain,  just to the right of spine below shoulder blade. Was incredibly painfull with the slightest of movements, but the pain died down over the next day or so.


   For the next 12-13 months, i had constant dull aching pain around that spot, and my lower back was very stiff when sitting/bending over. I tend to just ignore things and hope they get better, so i only seen a doctor twice in this period, a couple of months apart.  Both times receiving painkillers and a self refferal form for physiotherapy, and told that i am too young for problems like this. 

I was foolish, and never went to physio.

  About 12-13 months (January 2015) after the initial pain, my pain had started affecting the same area on the left of my spine.  I also one day, for no reason started to get incredible pain in my right knee when walking,to the stage i was unable to put weight on it.

   This went away again overnight, but kept coming back anytime i tried to walk longer distances ( 5+ miles). Starts off as a dull ache but if i ignored it, it again becomes too painfull too take my weight. I stopped walking longer distances, and it never really came back,untill later on.

  I never seen a doctor about this, as  i was working away from home, and i also did not think it was related to my back, never even occured to me that it might be.

For the next several months, my back pain seemed to gradually get worse,some days being worse than others,and the pain becoming more widespread over my back.

    Around July 2015, i awoke one morning and went to move my neck, which gave me an extremly painfull shooting pain down my neck/spine into my back. I managed to slide out of bed and get stood up without too much movement of my neck, and the pain was not as bad when standing.

  I noticed this day however, that my right knee was painfull again, and also my left knee was starting to give the same pain.  This was when i realised that the pains seemed to be connected. 

    The neck pain lasted for a week or so before settling down, although since then my neck has always been sore when looking down. It gets very stiff and pain goes down my spine  to about the shoulders.

    I made a doctors appointment at this stage, although it took 2-3 weeks to get one.    Again i was given pills,self refferal form, told im too young and asked if perhaps it was just the way i slept on my neck. She did decide to do blood tests however. 

    So another couple of weeks to get bloods taken and then the results. One level was low,although i forget the name. (Pottasium? Began with  a P)  2nd set of bloods were taken to see if they were the same, but i never heard back so i assume that everything was ok 2nd time around.

   I was told Physio was pretty much the only option now, so try that and we'll see.I handed in the self refferal form at this point, (about August/september by now)

My pains were steadily becoming worse. Back pain was more painfull, and my knees were just aching most days, without having walked any distance at all.

About October, i again awoke in the night,with incredible pain on my left, sort of just below the shoulder behind the ribcage. I really struggled to move at all, and just lying on my back it felt harder to breathe, and it was also painfull to take a breath in. 

    The slightest movement/twist/cough/sneeze gave me extreme jolts of pain. It lasted like this for 2 days, and was sore enough that i was off work for 5 days total, which is not like me. Just over a week before it was back to normal again. For several weeks following, i noticed a large increase in nerve twitches in my arms/back/legs.

  I did consider going to hospital, but the first day that would of been too painfull anyway short of an ambulance, and i also thought i would be seen as a timewaster in hospital with a sore back. (My own worst enemy)

I still hadnt heard from physiotherapy at this point, after about 7 or 8 weeks, so i phoned up, but it seemed that my form was never passed on or was lost, as there was no record of it.

   I decided to visit a private Osteopath near where i work.  He performed Joint Mobilisation on me ( a bit like wrestling but i wasnt allowed to fight back apparently wink) , said my muscles were all very tight and one shoulder looked lower than the other.   This done nothing for me, other than increase all my back/neck and knee pains for a week or so.

  I seen my doctor again at the start of November, and asked for a scan of some sort, as i felt that physiotherapy would simply make me more painfull also. She sort of agreed that an Mri might be of use, and said she would make an appointment for me to see someone  "Like physiotherapy, but not physiotherapy". I wasnt too sure what this meant, but thought it was a specialist of some sort.   Not once did this doctor actually look at my back.

About 4-5 weeks later in december i hadnt heard anything, so i phoned up and got told i  was on a 13 week waiting list in the physiotherapy department.

 So instead of wait this long, i decided to visit a private physiotherapist.

I paid £45  to be examined, told theres nothing physically wrong with me and there cant be anything wrong with me as after 2 years it would be better by now.   Reckoned its all in my head, might be sore, but its my brain interpreting stress signals wrong and maybe i got bullied at school.   

  So i left about 50 minutes later, a bit bewildered, £45 pound lighter and a new fear of physiotherapists.

  I was going to see another one, but id given up by this point. I researched stretches on the internet, and set about a routine of them for 2 or 3 weeks. I cant say they made a diffrence other than increase my pain and make my whole back ache.  I continued anyway,hoping it was healing pains.

   One day, i was doing the routine as usuall, when during a specific stretch, the Sphinx stretch, i noticed an unusual pain. I stopped and went and sat on a  chair for 5 minutes. When i  stood up and took a step, i almost fell over as i got a very painfull sharp pain shoot from my hip down my leg, past my knee to just above the ankle.


   Again, this pain lasted for about 3 weeks before it went away completly,and my entire spine has been sore since.

   I seen my doctor in january (diffrent one, last one seems to have disappeared) to again ask if physiotherapy is really the right thing, due to the stretches causing my new pains, and also ask if the last doctor booked me for the right thing. 

She said its confusing in the way they classify things and it might be physiotherapy department but its not physiotherapy.  Cue my bewildered look again.

She did examine my back however, and said that the muscles either side of my spine were solid,which they shouldnt be. Also ordered more blood tests, still waiting on results.

But she believes its the right people to see, but 13 weeks seemed to be a bit long of a waiting list, so she would try and hurry it up.

  About a week later (only 1-2 weeks ago now) i received a letter from hospital giving me a code to make a physiotherapy appointment.

I phoned up, and got given an apptment for 4 weeks later (2nd march)


   I have received a letter which says my appointment is with Physiotherapist __________. So everything points toward me seeing a physiotherapist, despite being told its not what im seeing.

   Decided to go and see anyway.

   Unfortuantly i have been off work for the past week. On monday i was at work when i felt my back start to change, and within an hour i again was left crippled and in extreme pain just to move.  Tensing my back hurt,twisting, lifting my arm or moving my arm forward all cause spikes of pain.   It is the same pain i experienced in October, except its on my right side.  Same pains to breathe/move etc,although not quite as bad.

    From what ive read, it seems it is the Lattisimus Dorsi muscle.

It is still painfull as i type, 6 days after the initial pain, although not as bad.  Back to work tommorow and hope i dont cause it to get worse again.

I have the physio apptment in about 3 weeks time (2 march). So ill see what they say.


If you read through all that, you deserve a medal, but i thank you. confused

So, my questions..

Can, or do, the physio people send you for an MRI first if they believe the stretches will cause you more pain, or will they just continue regardless?

It seems rather foolish  to me to not have some sort of scan done to potentially see what the problem is, as then they can tailor their physio routine to suit?

And does anyone have an opinion on what could be the cause? It all seems linked to that initial hurt when i bent over and stood up. I would never have believed something so simple could cause so much misery.

 And i realise it would be just an opinion, not a diagnosis.

The most annoying thing about this,despite it pretty much ruining my life, is the fact no one has even even hinted at a diagnosis.  Never been told sciatica, slipped disc, nerve damage, anything.   Only thing ive been consistently told is that im too young to have the pains.

Anyway, thanks for reading.  If you did read it all, go take a break and walk around a bit, you dont want back problems  from sitting too long razz


1 like, 26 replies

Report / Delete

26 Replies

  • Posted

    Hi Trig24,

    From what you describe it sounds like a slipped disc that is trapping a nerve, resulting in the jolts of electric like pain down your leg. The bit I can't put together is that you have pain in your arms and top of your back as well as your legs. It tends to work as a rule of thumb that if you injure your top back, neck area you have arm pain like electric shocks from pinched nerves. And the same if you have injured your Lumbar spine, thus get the leg pain. At least your doctor should be sending you to see a consultant nuerologist and they would normally send you for a MRI.

    You could do this all privately with a referral from your own GP. You'd be talking in the region of £1000 for consult and MRI, depending on how many areas they scanned.

    For peace of mind, £1000 isn't a lot considering the pain you are in and how young you are.

    What meds have you been given?

    Report / Delete Reply
    • Posted

      My post was even longer than i thought when i see it posted, so thanks for reading.

      Idont have pain actually in my arms, i meant when i move my arms it causes pain in the area of the lattisimus muscle.

      I was given Naproxen the last visit to docs, She thought it might help with the muscle tightness in my back.    Visits previous to that was Ibruprofen and naproxen also.

      Ive been taking ibrubrofren since the stretching incident, as my whole spine has been painfull.  And for the last week ive been taking Baclofen hoping it would help my muscle pain. Not prescribed to me though. (And im assuming the recent pain is the lattisumus muscle)

      As you say, £1000 isnt alot to get better, id gladly pay £10000. Can the doctor deny your request for a refferal form? 

      Report / Delete Reply
    • Posted

      No they can't deny you a request for referral I asked for one and got it I've seen 7 specialist in a space of a year having a EMG test this week got my DWP face to face interview later this month I put my form back late 2014
      Report / Delete Reply
    • Posted

      Hmm, i might consider this then.

      Its only 3 weeks till my physio, so i think ill go and see what they say, and then consider private after that.  Im still unsure whether its even a physiotherapist im seeing.   The letters all point that way, but both Docs said it wasnt.

      Whats the wait time like for private?  From handing in the form  --> Consultant ---->Treatment/Mri?

      Report / Delete Reply
  • Posted

    NHS phyiso is rubbish one size fits all waste of time and money I was worse off when I had mine do a few stretching from a sheet and left too your own devices only a MRI scan can show the real damage done and I waited a year for one now I'm worse off than when I first had back pain now got peripheral neuropathy PN which has no cure my lower disc is flat I've seen the scans L4 L5 DDD and si joint pain I take 200 mg slow release tramadol 9 x3 gabapentin and cream for the PN if you want anything done with the NHS you need to push hard for treatment find a good gp and get them too help you I've had back pain for over 22 years since my early 20s been told it will only get worse as I get older the pain clinic are a must and are worth there weight in gold.

    I went private back in 2009 spent £1,000 on treatment and it helped for a while but came back worse the drugs I was on made me gain massive weight which made things worse with the back.

    I know how your feeling it's bloody awful living in pain



    Report / Delete Reply
    • Posted

      I never thought my pain would last as long, i cant imagine how it feels to suffer for 22 years.   

      When you say you waited 1 year for an MRI, was it private or NHS?

      And if NHS,  was the waiting time 1 year, or just thats how long it took from start to actually getting one?

      I curious as to what the Average wait is for an mri. Ive read about 6 weeks, but considering im up about 17 just for physio that seems a bit short.

      Report / Delete Reply
    • Posted

      Nhs for a mri scan around 4 weeks for phyiso i saw 6gps they all said no to a MRI scan it was only when i said my feet and toes are numb and tinging i got the scan   

      now had the emg test it was normal so no nerve damage i dont know where to go now ? all this in 3years 

      Report / Delete Reply
  • Posted

    Agreed on the NHS Physios. Do you live anywhere near Spire Back Clinics? There are only two in the UK. Luckily I live close to one and got treatment there 2 years ago when I was in a similar situation to you. There are superb.

    As said, push and phone as much as you need for NHS stuff. I've just had a MRI within 4 weeks of seeing consultant and now on route to get a Discogram within next two weeks. All this was done over the past two months. You need to phone and phone and keep doing it till you get somewhere.

    But research your local area for consultants in nuerology or orthopaedic back issues. Some GPs no diddly squat! You need to do the ground work and get them to refer to them. Don't stop trying and dig your heals in if your GP fobs you off. I'm lucky that I have a superb GP who is like a bulldog and doesn't take no for an answer.

    Report / Delete Reply
  • Posted

    A question i forgot to ask.  Could sciatica cause pain in only your knee/knees?

    I believe that the pain i got after stretching, the shooting pain from my hip down my leg to ankle was possibly sciatica, from what ive read. But thats the first time its really affected my full leg.

    Im just wondering if the previous knee pains could be sciatica also?

    Report / Delete Reply
    • Posted

      Yes it can cause knee pain I'm no doctor but I know about sciatica pain it can go all the way down too your toes so yes it can cause knee pain I've got it in my left knee very painful at times deep heat and a wrap helps
      Report / Delete Reply
  • Posted

    Hi. Try reading this post. It might be very helpful.       Mycotic Arthritis - Start asking your doctor about it    

    Paste the text to the search box. 

    The following is more up to date.

    It could be that you have an infection in the muscles and nerve strings running through your back, maybe from sleeping on an infected mattress on holiday or at home. The futon type mattress could do this. The solid type with the cotton filling, which was very popular and has been quietly taken off the market. (Organic matter (cotton), damp, condensation (interstitial) mould, fungus) v unpleasant.

    I wont go into details, but, from experience, taking antibiotics ( the penicillin type) seemed to trigger the problems also.

    Have an MRI done that particularly looks at the muscles and nerves of the back.

    You'd be looking for a cyst or small infection near the relative nerve strings. Have a look at a body map of the nerves to give you clues as to where the problem originates from. Think of the it as a wiring diagram where a short circuit could be at any point along the route of a wire.

    General advice

    The back and spine is the most vulnerable spot on us humans, unlike most/all other animals, we dont have a layer of protective fur to shield our skin, so be careful what you sleep on.

    Use a mattress protector under the sheets.( Should really be called a human protector). Basically, an impermeable layer to protect you from whatever you are sleeping on. All it takes is one small spot or cut to be infected to be crippled several years on.

    Also, another furniture related warning. Be carefull of low backed chairs. If you have a small undetected infection or cyst in your skin then the act of leaning back onto the hard edge of a low chair will create enough localised force to push any infection past the skin layer into the more fluid internal areas. Also, not just chairs, any pressure on the skin could do this. A too tight belt for instance.

    Simple things that helped me.

    Disclaimer : The following information is what I have learn't from solving my health problems. It may not work for others and there may be some risk in following my methods. 

    Don't eat - sugar, dairy products and fruit.  Raisins and bananas seemed fine though.

    Don't eat - wheat and yeast products.   100% Rye bread is fine. 

    Do eat : Meat/eggs/protien and green vegetables, rye bread, oats, raisins and root vegetables (for sugar)

    Grocery shop pharmaceuticals.

    Cocounut - Eases joint pain and mobility. 100g twice a day hot or warm with food. 

    Peanut butter (best quality) - general health and infection and skin - 1 small jar a day for 3 days and then ease off quite a bit.

    I've not combined the coconut and peanut butter together. It could be a bit too much for the body to handle. Maybe causing damage to organs.

    Any other nut from a warmish climate. Brazils, walnuts etc.

    Mixed nuts with raisins is the perfect snack.

    For skin health - Tradional (alkaline) soap is best, not modern PH balanced liquid soaps.

    For a locked up spine and joints, My discovery of combining antifungal drugs (terbinafine or fluconazole) and coconut seemed, to me, to be the best option. 

    I think the medical proffesion are starting to experiment with it now so it may become recognised. Think of the coconut as a delivery method for the antifungal molecules.

    The spine and joints have previously been very hard to treat with pharmaceutical drugs because there is no direct blood supply to the joints. The coconut is readily absorbed into the body because of its tiny molecular size and is directed to the joints for lubrication purposes, The pharmaceutical drugs seem to piggy back a ride. Well, that's my theory.  

    I think it works throughout the body also, making the body more conductive. Eyes also. Seemed to clear my head aches and stigmatism in one eye after a bit of scare with loss of vision in that eye.

    Hope its not too much information

    Good luck


    Report / Delete Reply
    • Posted

      Forgot to mention -  Sun flower oil seems to have a really adverse effect on my health, which rules out most processed and takeaway food. No idea why. Maybe a food scientist could give a reason.
      Report / Delete Reply
    • Posted

      Hi Paul. Thanks for the positive message and very sorry to read about your back problems. I totally agree with your views on the NHS physio. Wait six months for an appointment, have a scant appraisal, and be asked to make another appointment In six months. Absolutely soul destroying. Thinking back over the past 8 years It really was a period of absolute hell. I could hardly walk or function between 2013 -2015.Thankfully, my memory easily forgets the worst. The thing is that it did come to an end and I function quite normally now. I still have a few very very minor pains but the debilitating sciatic like pains and muscle pains are totally gone and all my joints function perfectly if not better than 10 years ago. I still smoke 20 a day, but, sod it. Apart from that, I'm absolutely fine. Regarding how I fixed my problems, I think it was a bit of a medical miracle, which I documented in full to my GP,  The Lancet  and here in a previous posting (i've put in a link above). The main thing about muscle, nerve and joint pains is that if they're not from an injury then they must be from an infection. Seems simple really. I was told that my problems were age related wear and tear etc. I was late 30s when it started, so, Absolute rubbish. to be polite. The worse part of it all was that knowing my circumstances and my self treatment the GPs were unable to help or prescribe common and cheap drugs as it didn't fit into their set diagnosis/treatment, and when they did, they prescribed me a placebo. Hopefully this will change for everyones sake. I cant remember what back problems cost the NHS but it's an astronomical figure.  

      As regards how I treated my condition. I used cheap common drugs and combined then with food stuffs. There were no major problems. I did wonder if i'd wake up a couple of times, but I did. But It did take many months and required adhering to a very strict diet and experimenting with different foods.

      I really hope you can gain something from this. 



      Report / Delete Reply
    • Posted


      I find the way too go is do your own research into back problems and how they work the Internet is a gem for this my jobs in the past have played a part in my troubles hard manual work along with driving and he fact the drugs I've been giving has made me put on a massive amount of weight back does not help matters at all I try whenwatch what I eat but can't exercise anymore I remember the waiting room at the hospital it was full everytime I went problems with backs etc yes it must cost a fortune on the NHS I don't know what the answer is maybe change of eating food etc would help we don't do enough exercises but that's what got me into all this mess in the first place

      Report / Delete Reply
    • Posted

      It does seem absolutely crazy that we have to do our own research, but then again, from my work experience, many of my clients do research and design what they want on the internet and it can be really helpful. So I see it as a positive thing, not an affront.

      Hope you're getting looked after and things work out.

      All the best M

      Report / Delete Reply
    • Posted

      To follow on from my previous post. 

      I've been thinking about my comment on different soap types a little deeper and think that the subject has far more importance than I initially thought and could well be the final piece to the puzzle. 

      Basic facts.

      Traditional bar soap is made from Lye (alkaline)

      Liquid body wash/ gel does not contain soap. 

      Liquid bodywash/gel became popular in the nineteen eighties. ( as I remember)


      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up