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Hi from the uk

Hi my names Jo or Joanne. I live in the uk, ok a bit about me in august last year I had uncomfy pain in my ribs followed by chest pain which was confirmed as being from my neck, then went straight on to have a 5 week period of vertigo which I was told an inner ear infection but I now suspect was caused by my neck.

After having acupuncture to help with the vertigo I woke two nights later tingling from head to toe. The next day I woke with spasms in my legs and feet, terrified I rushed off to the accapuncturist thinking this was the cause. I then went to gp who handed me anti depressants,
Role on a couple of weeks with no sleep, crazy sensory symptoms and terrible leg spasms, I was finally referred to a neuro and had brain MRI which was clear.

The neuro I saw I have to say lacks bedside manner and straightaway said my symptoms were stress. Had a clear spinal MRI this year and the neuro referred me to a neuro psychologist who after evaluating me told me he wouldn't yet treat me as he wasn't 100% sure it was stress
Symptoms had calmed until 5 weeks ago when I developed the worst lower back pain I can describe, similar to labour pain. It also affected my bladder, my pelvic area and hips hurt a lot and my legs have nerve pain. Sometimes my pain is so bad all I can do is cry. I am on a cocktail of meds that do help though
I was referred for a second opinion and saw the neuro last week after an anxious 4 month wait. I self picked him as he has a good reputation.

After asking a few questions, doing my reflexes, reviewing my previous mri scans, he diagnosed me with chronic pain syndrome. His explanation was that my nervous system has fired up and this happens to many people, due to the nervous system being so complex there is no known cause.

I've been referred to the pain clinic and just waiting for my appointment now.

Has anyone else on here got this diagnosis? Would love to hear from anyone who has. At present I'm finding this diagnosis difficult to accept but perhaps it is just something I need to accept.
Sorry if my post is a but long, I could go on all night as I'm guessing most people could.

Currently trying to work out this website so I hope I am able to log in and see replies if I get any, all the best Jo xxx


  • Welcome Message

    Yes, a chronic pain syndrome can occur but there is usually some insult to the nervous system that triggers the nervous system in the first place. Have you had MRI's of all of the spine? From your neck down through the thoracic and lumbar areas of the spine? Have either neurosurgeon ( these are board certified spine surgeons, correct?) gone over the images with you, and discussed the reports? Or have they just dismissed them?
    There are different types of neurosurgeons, ones who work specifically on the brain, ones that work on the spine, ones that work specifically with traumatic brain injury, or cancers, so it is important that you find a spinal neurosurgeon and not a general one or one who specializes in other areas of the nervous system.
    It may be that there is some nervous system chronic pain syndrome set off, but it doesn't really sound like they have done much to investigate it so far and make sure.....
  • Hi and thanks for the info. I did have a full spinal MRI. I have had it looked at by two neuros now.
    The first neuro diagnosed me with psychosomatic disorder. The second who I've been reading up on and seems to specialise in quite a lot of things has diagnosed the chronic pain syndrome. Just told me that the nervous system is so complex that I may never know why I have this.
    He has referred me to the pain clinic. He has offered that I can have a spinal tap if I wish to 100% rule out ms, however he said my best option is the pain clinic because if I go for a spinal tap it will delay my treatment at the pain clinic. He and my other neuro seek convinced it is not ms anyway.

    My other concern is of I could have a rheumotological problem in my hip or pelvic area? As this is where a lot of my pain is, however I also realise this could be referred pain from my spine.

    I feel I am not being properly investigated and really concerned they are missing something. They won't refer me anywhere else. At the moment I feel like banging my head against a brick wall. To me this is a problem to them it seems not x
  • sandisandi Posts: 6,343
    edited 05/10/2014 - 7:44 AM
    I would have to agree with you, it does indeed seem that you aren't being taken too seriously at this point.
    Do you have copies of the MRI reports?
    Pain in your hips could most definately come from your spine, so I am going to include a few more links. Have you considered seeing a rheumotologist? Or possibly a physiatrist? They both tend to look at the over all symptoms and will be a bit more concerned with the overall picture to find out why this may be happening.




  • Just a little note from someone who's dealt with the NHS.. Is your GP sitting in the middle of this, talking you through all of the reports & specialists? Do you have faith in your GP? How well you are treated & how hard things are being pushed can sadly come down to your GP's behavior. You shouldn't feel 'handed off' to specialists, your GP should be pulling their speciality into your treatment. I hope this makes sense. You can & should see the pain specialist but that shouldn't stop your GP sending you for other tests. If you feel you need further investigation (I think you do) PUSH both your GP & pain specialist for these tests.

    I know the NHS can be incredibly frustrating but adopt the mindset that they are working for you & PUSH, push, push!

    Good luck!
    Osteoarthritis & DDD.
  • Thanks a lot or the information. I haven't seen a rheumotologist but I'm wanting to ask for a referral this week.
    The neuro I saw said I can go and see all the specialists I want but he bets I never get another diagnosis.
    I have been offered a spinal tap as he says this will rule out ms by 100% but he says it would dealt seeing the pain clinic by months so he recommends I go to the pain clinic instead.
    English girl I'm guessing you know the good old nhs well. My doctors surgery is like most where you have to keep the phone on re dial at 8 am and if you not fortunate enough to get through by 8.30 that's it no appointment that day.

    My own gp is a lady of few words but if I'm lucky enough to see her as she only does 3 days, then I think she may work with me. The duty manager is also quite good but hard to get an appointment with.
    I will phone tomorrow and be a bit more demanding to the receptionists. X
  • Sandi would a rheumotological problem always show on a spinal MRI? Thanks
  • it would depend on the problem, and where in the body it effects you.
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