Unknown diagnosis

I have been suffering with chronic pain, which has been getting worse, for the last 5 years. It seemed to start from a road traffic accident but I have not been able to confirm that medically. The pain started in my neck, shoulders and back of the head (where I get crushing headaches) and over time I now get pain all over. I have had a mri scan which showed nothing wrong and x-rays. I have been on a range of drugs Amitriptyline, morphine, co-codamol, gabapentine for example but nothing seems to take the edge off the pain. I also suffer with extreme fatigue, swelling of feet and ankles and now coughing up blood at times. Admittedly I feel as if I want to die when I cannot take anymore and that is more regularly than I would like it to be. I do try to look for positives but that is far too difficult to do now.

11 Replies

  • Wrossh

    There will be a combination of meds out there, which will work well to alleviate your pain. Your job is to keep trying until you find it.

    Best Wishes


  • Thanks Jim if there was something to alleviate the pain for a few hours that would be great. I'll just keep on at doctors, who in all fairness has been trying to help as best he can.

  • Hi... I have had chronic daily headaches for over 30 years and the thing that keeps them under control the best is long-acting morphine. You mentioned morphine but I don't know if it was long-acting or not. Good luck!

  • Wrossh

    I have been trying for 5 years am currently taking 25mgs amitriptyline one per day in combination with 10 mgs oxycodone 6 times a day, (every 4 hours. This seems to work quite well.

    Oxycodone is the immediate release variant

    Best Wishes


  • Sorry to hear about your pain. I wonder if you have a trapped nerve somewhere. I had a trapped nerve in my shoulder and no pain medication would relieve it. I went to the Physiotherapist and they were able to untrap a nerve in my neck which relieved the pain. Perhaps you should discuss with the doctor a physiotherapist or chiropractor since the doctors have not been of any help.

    I say do not give up hope, because there will be something out there that will help, you just need to keep going until you find it and never stop looking. Do not accept what the doctors say, if you have had no relief from them. I have had plenty of times in my life where the doctor's have said nothing is wrong and then when I sought a second opinion found out there definitely was.

    One time I had a massive kidney infection which one doctor did not pick up on and told me it was all in my head. Thank goodness I did not give up and went to another doctor and he said I was very near to losing my kidney it was so badly infected. He was able to treat straight away and luckily I recovered. But that first doctor was going to treat me with anti-depressants, saying it was all in my head!! After a course of antibiotics, I recovered and I cried because I had found the answer, but I was worn out in the process of finding a doctor who would listen that something was wrong. So please do not give up in finding the answer to your problems - it will be out there.

  • Thanks zeezee22 for your reply, as I have said I try to think of positives but when the pain is too much I tend to hope that when I do get some sleep that I don't wake up to it anymore. I have been checked for trapped nerve and other neurological conditions but all results don't find anything wrong. For me knowing what I am fighting against is part of the battle.

  • Hi Wrossh

    Have you been to a physiotherapist? If not, can you ask for a referral maybe? Doctors do tend to respond to clinical evidence like xrays or MRIs rather than look at the bigger picture sometimes which isn't great in your case!

    A physio can look at 'you' and possibly find something to help?!

    The coughing up blood isn't good at all; have you told your doctor this? It may be as a result of all the stress you're under or it could be something completely separate but it definitely needs investigating.

    Don't give up; it's a long game sometimes but you need to stay strong to be able to manage this.


  • It could be Fibromyalgia. It often starts with a trauma. If you have (or had) a very driven personality that could be the key to this. And if it is then it is something you can break free of.

  • Hi I may be able to help . I had an accident at work nearly 4yrs ago get all those symptoms and more .had all the tests been passed here there and everywhere . I have recently come to tampa I live in the UK. I had a digital motion x-ray they get you to move and watch you spine neck and skull . I have 8 damaged ligaments in my neck . No one in the UK has looked for it because the have no equipment . Which is so unfair . There is hope do not give up get back to me xx

  • You need to see a GP about the blood issue.

    Are you getting enough sleep. If you do not get enough sleep then pain problems will increase. Poor sleep means poor muscle control and muscles have an influence on pain.

    Sleep is highly important as the brain only gets rid of waste products when it is a sleep.

    MRI scan indicating nothing is wrong implies that you have a posture and muscle control problem. Pain killers is not going to deal with that problem. An Alexander Teacher can help with a posture and muscle control problem. Physiotherapists have a tendency to know nothing (very little) about posture and muscle control.

    A McTimony Chiropractor should be able to help with muscle micro cramps.

    You need to start investigating what your body can and cannot do. You need to start looking at what is your normal way of doing things and see if you can replace it with a better way of doing things. Using Mindfulness and meditation is a useful tool for doing this investigating this.

    Hope this helps.

  • Hi wrossh.

    I can totally relate to you. I've been suffering with chronic pain for 20 yrs.

    My story started when I was 18yrs old, they put it down at first to growing pains, fast forward a few yrs and numerous operations on both knees but more so on the right knee I'm in more pain now than I ever was. 😠. I now have no feeling on the right side of right knee and down the right side of my right leg. I like yourself am taking gabapentin, amatryptatine, morphine tablets, fentanyl patches and lidocaine patches, all of the above just take the edge of the pain. Also like yourself ive got back and shoulder problems. Had surgery on my shoulder only to have it operated on the following to release what had tightened to much. Now suffering with foot pain,as if I don't have enough to deal with I now have this.

    Extreme fatigue is a nightmare, I constantly feel tired and have no get up and go most days. An don't get me started on sleepless nights.

    I'm due to have an op on my hand on Friday, my husband is apprehensive about me having it done, as every other operation and procedure I've had done has made things 20 times worse.

    CHRONIC PAIN, is a pain in the backside( could of sworn but thought best not.) Lol.

    Any time you want a chat or just to rant I'm here and a lot of us on here feel your pain and can sympathise with everything you've said.

    Take care Debbs. Xx

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