Please please help me. Is this all in my head

So I have had a pain in my shoulder for many years and my neck was really bad. After fighting my gp that it can't just be CFS I had MRI which showed DDD in C6 and C5. This was sad news on top of my CFS and Raynaud's disease. Move forward 2yrs I get referred to the Pain Clinic where an up to date MRI was ordered and it only showed early stages of bulging disc on C6. This shocked me as I know it can't get better, I showed him earlier results I was sent and he said rubbish. He ordered me to have a nerve conduction test, all tests came back normal and then the neuropsychologist said I need psychological help.

As I sit writing this my neck is killing me, my fingertips are numb and my shoulder is hurting.

I have contacted PALS in help in getting a definitive diagnosis regarding MRI but as for the neuropsychologist I am still devastated.

Any opinion on this would be so appreciated

11 Replies

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  • Radiologists can vary in their interpretation of the same scan but that is a considerable difference. The consultant/neuropsychologist in the Pain Clinic said, "Rubbish" about the previous scan results?

    Contacting PALS seems wise - I wonder if someone can obtain your previous scans and ask for a 2nd opinion on those and your current ones?

    I think a fair number of people here report that some types of psychological help can be very useful - much would depend on what's being offered to you and, to some extent, the spirit in which it's being offered.

    The inconsistency is very depressing and it undermines trust in the overall process.

  • Thank you for your reply ITY, I can see this being a slow process but I know in time I will get the answers that will be consistent.

    Yes the pain clinic and the neuropsychologist are basically saying the first results which is so much more in depth is complete crap

  • First of all, yes, pain is all in your head. More specifically it is in your brain. signals come from various parts of the body to the brain, and the brain decides whether those signals mean danger, pain (and there are different types of receptors for that too) or light touch, or a single poke and so on. So a light touch might be a sensuous caress, or it could be a light touch from a life threatening plant, the brain has to decide, and then decide whether you are actually feeling pain or not. the pain doesn't exist in the parts of our body outside our brain.

    But this doesn't mean at all that you are imagining it! The pain is real, it is just that pain is in your brain.

    So some things can go wrong with this. The brain can misinterpret the sensor as pain, when in fact it is only light touch. Additionally if there is pain for a long time, even after the sensory stimulus has gone, the brain gets into a pattern where it still thinks there is pain when there isn't. These are the sorts of things that neuropsychologists can deal with.

    Just a word about MRIs. When they first started being used they scanned people with lower back ache, found a physical anomaly that they thought was causing the pain, and operated. Only the pain didn't go away. So some bright spark decided to scan people without lower back pain, and they realised that what was appearing on scans was just normal signs of ageing.

    As MRIs have got more detailed they are finding all sorts of things that they don't know what they are and whether they are causing problems. Science moves on, that is the basis of it. We strive to approach the truth but we rare actually get there. So it is possible that with the type of machine used, and the knowledge at that time, they felt that one thing was causing pain. However with a newer machine, and new knowledge, it might be that they now know that that is unlikely to be what is causing the pain.

    So go with the neuropsychologist. They will be able to help you, but also if the brain aspects of the pain are dealt with, then they can look again at the physical aspects. It doesn't have to be one or the other, but it does work better if both are dealt with.

  • Don't let it get to you. I have multiple diagnosis' and have been going through testing for years to get an accurate diagnosis of an unknown autoimmune disorder. However, a few years ago I awoke early in the am with a migraine headache, severe vertigo, confusion, decreased hearing, inability to walk or speak clearly. This lasted 14 hours. The residual effects left me unbalanced, uncoordinated, unable to verbalized my thoughts, etc. I had to go through speech therapy for a few months. My neurologist couldn't find anything do he sent me for a neuropsychological testing and they said the same to me.

    ...fast forward 2 years when I saw a new neurologist who before even testing knew that it was basilar migraines. Forget the neuro/psych, find a new neurologist and get a second opinion.

  • I realise you mean well and getting a second opinion is the right thing to do ,but Doctors will not contradict each other usually due to many factors and ego's and legal issues play a large part in this sadly.

    What you will find is that when you have one diagnosis and it is going to impact on you to such a degree that getting other diagnosis's will not really matter and further test's and probes only cause more distress so sending you to a psychologist is the last part of the process in them saying go away there is nothing we can do due to the side affect's from a certain condition, because although they will not say it to you they will know and talk to each other hence the psychologist.

    But do your own research and find out for yourself and then you will have a better understanding of where the doctors are coming from and their reasons which may make for a lifting of the stress, that may help in how your body and mind copes with your lot in accepting that there is nothing more that they can offer you that will not add further to your stress which in turn makes managing the pain more problematic, sorry if this is blunt advice but I've been there and no amount of jumping up and down demanding other diagnosis's really get's them to change their minds once certain decisions are taken and also due to pressures of cost's and performance issues which play a more significant part in the whole process now.

    I hope this not too blunt advice best Alex

  • Alex thank you very much for your reply. I guess I was looking for some sort of miracle after not wanting surgery. I just want the pain to go away I guess.

    But if they aren't going to contradict themselves then I'm the one who will loose as my other half now believes it's in my head which is also distressing me.

    Anyway I really appreciate your input.

    Many thanks

  • Thank you SMcCabe, you might be right. Maybe what I need to do is just keep painkillers and deal with this. Only problem is I've already the wheels in motion so now I need to wait. If other person who commented on this is right and they won't contradict each other I can only see me alienating myself at the hospital.

    I had something like you, one night I blacked out, I came round and was sweating badly. I couldn't talk or walk, I managed to crawl to the toilet and lost all bodily functions. They still are no clearer what caused it but my SATS were all low.

    I really appreciate your input, thank you for your time.

  • Please get a second opinion, I had severe neck and thoracic pain for 18 months, physiology, spine epidurals and spine cortisone injections didn't touch the pain, I had a MRI scan which was seen by one radiologist who said he could see nothing wrong and was told sometimes severe pain can be in your head!! Well of course I knew that not sleeping for nearly two years, giving up my job, and being unable to walk more than 10 meters was not in my head! So I asked for a second opinion on the same scan and guess what?! His report was as follows this patients cervical MRI scan shows severe foraminal narrowing at C5/C6 and C6/C7 severe degeneration of C6C7 discs with clear signs of cord and root compression. I was then sent to a neurosurgeon who was shocked at how long I had had the symptoms and suffered for so long and I was listed for neurosurgery for a C5/C6 C6C7 anterior cervical discectomy and fusion which I am now post operation 6 weeks. If I hadn't got the second opinion there was a high risk of permanent spinal nerve compression which the consequences of doesn't bare thinking about😞 I also suffered from the numb right hand and pins and needles 70% of the time due to the trapped nerves. You know your own body , please get a second opinion

  • Thank you for your input I really appreciate it. I am at the moment under an orthopaedics surgeon who wanted to give me the surgery in the first place. I am going to see him at the June and will discuss with him possible solutions. I think I would be better off under neurology but will have to wait for the moment. I also started suffering over 2 years ago and I'm so tired of it all x

  • I have ddd, but also have had shoulder problems about same time as the ddd. I was told by one doctor it was impingement syndrome of the shoulder, which would be both shoulders for me. I've had it for years, but other doctors I've been too, debate that it could be something else. The same pain meds I take for my back, seem to help with shoulder problems, but just about every pain/spine doctor I've been too dismisses it and more or less concentrates on my back problem and forgets my shoulder delimma .

    I think a bone doctor probably would be willing to help more with that type problem. As it seems the pain and spine specialists are not.

  • I find it quite odd that specialists view MRI scans and come up with different diagnosis. Pain management doctors are the best, I am about to have injections in my shoulder in 3 different points. Apparently when you tense due to back problems it causes the shoulders to bare the weight and knot. I apparently have a straight neck which is what causes my shoulder to be in constant pain even with painkillers.

    I will of course let you know if it works but please go to your gp and get referred to the pain management specialist, they will help you with your shoulder x

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