New Here with Undiagnosed Pain

For the past few years I've been suffereing from chronic pain in my back, ankles and feet, hands and wrists, and to a lesser extent my knees, and lately have been getting an increasing number of muscle cramps which have mostly been affecting my lower legs, back and right hand. I have been to my GP several times without a whole lot of success. Had one referal to rhuematology, one to physio (only 3 sessions) for what they thought might be a slipped disc and have prescribed orthotic insoles to help correct fallen arches. None of this seems to have done any good, and I just get looked at like a time waster every time I go back to my GP. This whole situation has me feeling rather depressed as I know something isn't right, but so far have had no joy with a diagnosis. Rhuematologist tested me for RA and fibro. Blood test came back negative for RA and she said I didn't have enough of the trigger points for fibro even though I display quite a few of the symptoms. All I've been told is that it could be "wear and tear"

Really not sure where to go from here, even though I was so tempted to go back to my GP on an emergency basis last week as stood up and felt as though I was going to collapse with the pain. It is affecting practically every part of my life, but I feel like I'm not being listened to

Any advice?

9 Replies

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  • So sorry for your pain. I know how it feels for doctors to think you are a time waster and not listening. All I can say is, do not let them intimidate you. When this happened to me, I swapped my doctor practice, found a doctor who was willing to listen. He started from scratch and did all sorts of tests and found out my problem, so was able to treat me for the physical problem he found and just in time, before it became serious.

    I would suggest you see another doctor, explain you are not getting anywhere and would like a diagnosis. This sort of pain could be arthritis, it could be muscular, it could be anything, but I guess the blood tests have not shown anything, so doctors are not sure what to treat for. Sometimes doctors are frustrated to give the right care when the simple tests do not show any decisive problem. But I say, do not give up. The main thing here is to find a sympathetic doctor who will work with you and control your symptoms, until the reason for all these symptoms become more apparent.

    The worse thing that doctors can do for patients is tell them there is nothing wrong, when clearly there is. It happened to my mum, it happened to me. My mum was of an age where she did not question the doctor and as a result she died from a failing kidney which did not get picked up. I was not of that mind and I questioned the doctor, found a second opinion and found the answer.

    The other thing is, if you can start to research on the internet. It helps you to know that you are doing something yourself and you may turn up your symptoms and an answer. It must be better than going to doctors and not finding the answer.

  • Thanks zeezee22

    I've been doing a fair bit of research and have turned up a couple of possibilities, the biggest one at the moment being fibromyalgia or something with similar symptoms. I only recently read an article that said severe heel and wrist pain can be a symptom, both of which I have had for some time. I had previsously put the heel pain down to my fallen arches, but you never know.

    The main problem I have at the moment is that I've been back to my GP so many times that I feel I'm running out of energy for the whole affair. How many times can one person stand being sent out the door with the doc rolling their eyes? It's got to the point of rediculous

  • Hi, sorry to hear of your troubles. I have Fybro, and what you were saying was ringing true with me. I haven't had a diagnosis yet, I have been incredibly weak in the past in getting a diagnosis, and at 54 I am becoming insistent. Because all the blood tests come back showing nothing, I have been referred to a place called Right Steps. I feel that because I have understandably been depressed, I am being fobbed off, however I am going to go through the hoops so that, eventually I may get a diagnosis. In the meantime, when I can I do gentle hobbies such as art, I have taken up meditation which helps with sleep, and I practice a very gentle exercise called Qui Gong. I hope for us both to get a diagnosis sooner rather than later. If you do not have Fybro, then whatever it is needs to be taken seriously. Best of luck!

  • I'm in exactly the same boat. I am being referred to the ICATs (specialist physiotherapist) just to hopefully get a full mri scan of my soft tissue, just to get answers. At least today they have given me more pain killers because I don't think I'll be able to walk down there again with this pain and lack of energy.

    stay strong

  • Hi Riffraffy

    Are you able to swap to a different doctor? One that will listen and not write you off or send you out the door without listening and working with you to find an answer. I know how frustrating it is to know there is something not right and being fobbed off with the doctor. If you cannot swap the GP, ask for a referral, and if the doctor says no, tell him you are entitled to a second opinion from a hospital consultant who are better placed to sort out the more complicated or not straight forward cases. I know how wearing it can be and sometimes you are so tired from the fight, you begin to wonder if it will ever be sorted out. But remember, once the answer is found, treatment can start, so never give up and do not accept what the doctor says if you know it is not right. We all know our own bodies better than any doctor and we know if there is something wrong. Just a thought - have you had blood tests for inflammatory markers? Not the normal run of the mill blood tests but one which will show up blood markers for inflammation?

  • I have to say that your symptoms do sound a bit like Ehlers-Danlos Syndrome hypermobility type. It is classed as a rare disease but those of us who have it believe it is more that it is rarely diagnosed, rather than actually being that rare in the population. I was diagnosed over 30 years ago and I have had to educate each healthcare professional I had dealings with up until they had widespread computer/internet resources. Even now I have to tell them the resources to refer to as the NHS Choices pages relating to it are very poor. Have a look at the ehlers-danlos.org which is the UK charity website and ehlers-danlos.com which is the US charity website. Lots of resources on them that may help you. I would also persist with your GP (or another GP if you do decide to change) and at least get a referral to a pain clinic. You have to persist with your GP, if you don't keep going back they will just think that they have 'fixed' you.

    If you do find that Ehlers-Danlos syndrome might be what you have, there are many very helpful groups on facebook regarding it that I find mostly helpful for support and finding out any new research.

  • If your GP is actually rolling his eyes, and sending you away with the advice that nothing is wrong, my advice is to speak to the practice Manager, as this is unprofessional, and he needs retraining. My experience is that a younger GP, who has been trained recently, is more likely to do the whole gamut of tests than an older one who is relying on "experience". I have chronic pain, and a Senior Consultant Neurologist told me that I was just depressed, and there was nothing physically wrong with me! Ten years later I found the diagnosis myself, presented it to my GP, who sent me back to the department. I was seen by a group of THREE doctors, who apologised, told me that I was "Textbook Case" and apologised again. Unfortunately, there is a "Golden Time", during which my treatment could succeed, and I was well outside of it. For this reason you should never just wait for things to improve, or accept a diagnosis that you KNOW deep down, is Wrong. I would still be considered a depressed hypochondriac had I not persisted, and I would have pursued a complaint against the first neurologist had he not already retired! In short, find a GP who welcomes the challenge, get all the tests, and keep going back. Change surgeries if they have no-one suitable, and ask any new surgery if they have a GP with an interest in chronic pain before you make a decision. If they don't, maybe you can find a young GP and Train him/her!!

  • Work and more work. Unfortunately you are in an area where you must do your own investigation.

    Fallen arches could be a posture problem. Your weight is being placed on the wrong part of the foot. To correct this requires looking at how you stand and seeing if you can change your stance to put the weight towards the outside of the foot. (not a good description my language skills fail here.)

    The knee, hip joint and shoulder joint need to be in a near vertical line when you stand. The head needs to balanced on top of the spine rather than forward of the spine and being held up by muscles.

    It is worth seeing an Alexander Teacher who can help you look at posture and muscle behaviour control.

    It may be worth doing a blood test for vitamin D. Vitamin D is involved in calcium uptake and calcium is involved in muscle behaviour.

    It is important to look at your sleep regime. If you fail to get enough sleep the fine tuning of muscle control will be affected. Muscle have a lot of influence on how much pain you experience.

    Might be worth seeing a McTimony chiropractor to see if removing micro-cramps in the back will help.

    Physio tends to be one size fits all. And Physio tends not to give careful instruction as to the best way to move muscle when exercising.

    Neither the McTimony CHiropractor or Alexander Teacher will cure your problem. They should be able to help reduce the problem which in turn will help make life feel better.

    Hope this helps.

  • If the rheumatologist didn't consider spondyloarthritis (the other main form of inflammatory arthritis after rheumatoid arthritis), then it might be worth asking your GP if you could be referred for a second opinion to a rheumatologist who specialises in spondyloarthritis (and ankylosing spondylitis, which is one form of it).

    Have you tried taking regular NSAIDs (antiinflammatories, like naproxen or ibuprofen)? If they did any good at all, then you might want to ask your GP if you could have a short course of steroids to see if it really is inflammatory pain. If you respond well to steroids then that is another argument for another rheumatology referral. Check out the signs of inflammatory pain on this website, and if you think it fits, its another thing to tell your GP nass.co.uk/about-as/getting...

    For what its worth, there is no single blood test that will diagnose spondyloarthritis, and even the usual inflammatory markers (ESR and CRP) can be quite normal in it, so it is a bit harder to diagnose than RA. Xrays and MRI also can be normal for many years (it can take up to ten years for damage to show on xray).

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