Really confused

I have had daily pain now since June 2001. The pain has increased over the years with additional accidents and normal life experiences, like the death of parents.

However, recently I've been having really bad migraines, with visual disturbances and have been experiencing burning sensation in my joints. I also suffer from neuralgia.

I am not a hypochondriac, but I do like to be informed. So I checked my symptoms on the NHS site. My symptoms appear to be either CRPS or Fibromyalgia. But the confusing part is that the symptoms for both are so similar. I had asked my GP about CRPS, I was told that was just another name for long term chronic pain.

I'm really not sure where to go from here, as the list of pain I suffer covers my body from head to toe. I have injury sites from whiplash, neuralgia from soft tissue at the occipital lobe, compressed vertebrae in my lumbar spine and a vascular disorder affecting my feet and ankles. Little wonder I'm suffering from depression too!

The current burning in my joints has me stuck in bed. I feel helpless. I'm miserable. I know many on these forums have similar issues. But I'm wondering if giving the pain a name really helps.

Any thoughts/comments are welcome. Thanks.

7 Replies

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  • Hi, I'm so sorry to hear you are suffering so much. Unfortunately a lot of chronic pain is not easily diagnosed . Given your current situation I would ask my GP to refer me to a consultant neurologist. As far as I am aware being totally inactive is not good so I would try to do some short stretches a day. I'm not medically qualified , but have suffered from chronic pain for 20 years. I would also do some ankle rotations to keep you mobilised.

    I do hope you manage to get the support you clearly need.

  • Yes I agree with, RT66' With pain, in certain areas, seems there is a time where we must end up with getting all the same symptoms and I agree that moving and stretching must be kept up, unless your doc says otherwise, and your not alone, if that helps, Catmag .

  • It's a bit chicken and egg with the diagnosis. You are relieved that what you have has a name, but then you have a disease or condition to deal with , starting over again. I think in most cases, knowing gives reassurance that there is something causing the pain. But then, you have something that needs your attention, maybe different treatments, more hospital visits. A new set of mourning to go through.

    Burning in the joints could be infection. There is a condition called infective arthritis, and it mimics arthritis, and can cause burning.

    Very important to keep mobile, even if this means stretching while in bed. Use cool packs to cool the knees down, only 5 - 10 mins per hour though. Or a cold spay.

    Get a neurology appt.

  • CRPS is Chronic Regional Pain Syndrome, a different animal to CPS, Chronic Pain Syndrome. From what I've read, we need to thank the gods we have the latter and not the former.

  • Thanks for those replies,

    I have an appt next week with my GP to discuss the burning sensation, so I will post again when I know more.

    Take care.

  • To be diagnosed with fibromyalgia, you need to have at least 10 symmetrical tender points at characteristic sites, for example, below the occiput, on the top of the shoulders, above the scapulas, on the outer side of the elbows or hips, on top/sides of the sacrum or on the inner sides of the knees. There is an image here (scroll down within the article):

    ehealthstar.com/shoulder-bl...

    Complex regional pain syndrome is usually limited to one limb...

    To know if burning pain in your joints is from arthritis, you would need to have some blood tests.

    To know how seriously damaged are your vertebra, you would need to have an X-ray or CT or MRI of the spine.

    For migraine, it can help if you identify the triggers and try to avoid them.

    I'm convinced giving the name to the pain helps. Recently I was worried if I have pleurisy or even spontaneous pneumothorax (because I once had it) or maybe a kidney damage, because I had quite serious, breath-taking side chest pain when lying down. I figured out the pain was from overstretching of a deep chest muscle because I was lifting one heavy bag once a day with an extended arm...So I avoided that and it went away in few days.

  • Thanks for that.

    The damage in my spine is compressed vertebrae Lumbar 3, 4 & 5 and cervical discs 6 & 7. These injuries were compounded by 2 further whiplash injuries and further nerve damage. I had an MRI and at that time 3 discs were protruding from my spine.

    Having read more, I think it's CPS I have. As for the migraines a neurologist told me in 2004 that I would have a form of migraine every day for the rest of my life. This was after a head & neck MRI.

    Thanks again for the info, it's just as good to rule something out, as it is to get a diagnosis.

    Take care.

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