Help, still undiagnosed and declining rapidly!

My husband suffers from an undiagnosed chronic pain condition. He has multipule triggers points mostly located from neck to waste on his back. In the last few weeks we have found a trigger point/lump on his upper chest just below the collarbone. It has increase dramatically over the past fortnight. He gets muscle fatigue from doing basic things. At present we are up to 22 trigger points the are relentless in a break from pain. Sometimes they all fire off and he is unable to manage as the pain keeps changing from one point to the next. He describes burning pokers stabbing or a sharp knife going in. They can cause him to black out from pain. At time he has difficulty breathing.

Has anyone experienced similar? Finally have a referral to the Walton in Liverpool. Now waiting on an appointment.

14 Replies

  • Oh he has also lost a stone/7 k in just over two months

  • Sounds like Fibromyalgia to me, but ask to be referred to a Rheumatologist, then you can find out if it is or not.

    Best wishes.

  • The local GP and pain clinic have decided it is not this but have not done any testing.

  • How can they say that if he hasn't been tested. The mind boggles, it really does.

    Nothing can be ruled out until he is tested for what ever they eventually find. Best of luck.

  • Go back to the GP and demand referral to the relevant consultant. You are entitled to do this and keep going till they give in

  • I have fibromyalgia which causes pain all over. Like a light switch turning on shooting, burning pain and spreading all over the body. Neuropathy can cause burning sensations as well. Your husband needs a neurologist. Good luck and God bless from Massachusetts, USA.

  • With weight loss, and a lump, it is best to have it checked out straight away. After that you can look at things which cuse chronic and neurpthaic pain like Fibromyalgia, ME, EDS and pain syndromes, but I would see your GP first regarding the weight loss and lump. Good luck.

  • It is great that you have been referred to the Walton as that is exactly the right place to be to get to the bottom of the problem. That is where the testing will come into it, as they will be more able to choose the right tests. It isn't the GPs fault, they are the front line, they run the basic diagnostics and when the patient's symptoms don't match something that can be treated in primary care, then it is on to the next level. So it sounds like they are doing their job.

    It is hard not to know what is wrong, but in medicine there is a lot more uncertainly than the clinicians let on about. It usually backfires on them though, as the patients are set up to think that there is a cause and a treatment for everything that ails us, and that if they don't find it they are incompetent. But sadly there isn't always a clear cut cause and treatment for things.

    I hope it doesn't take too long for the referral to come through.

  • Just to second cyberbarn that the Walton has an excellent reputation and is a superb referral to obtain.

    Best wishes for a clear diagnosis and good, solid treatment plan for your husband.

  • I would love to know what the Walton is

  • Thank you, wish I could go there. My pain management programme does not offer links to diagnosis for rheumatoid Arthritis or fibromyalgia. Looks like a really good clinic

  • Weight loss, should the GP do a simple blood test the see if any indicators are in the blood. I too have lumps all over my body and a solid stomach area. The GP said it was hard and looked concerned. These lumps have got bigger, but not cancer markers within the blood. I am trying to loose the weight.

  • This sounds like chiropractor territory. Worth seeing a chiropractor. They can give a useful second opinion and remove a lot of the pain if the pain is due to muscle micro cramps.

    Also useful to get an MRI scan. See the GP urgently lumps can be indicative of cancer so can weight loss if you have not reduced your food intake.

    Hope I have been helpful.

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