Getting a doctor to listen

Hi, I am having trouble getting anyone to acknowledge my problems. I have had some problems my whole life with reoccuring 'viruses,' impetigo, fatigue, migraines, joint and muscle pain etc and the past few months it has got to the point where I cant ignore it anymore. it began with my legs giving way, night sweats, heart palpitations and exhaustion. Usually I am an active person. I work hard, go to the gym, swimming and usually have a busy social life. For a few months all i did was work and sleep and the sleep was never enough... now i have been off work 7 weeks. If I am on my feet longer than half hour my legs become really painful and heavy and I have to rest, sometimes for days. My chest is in constant pain and i have shortness of breath and wheezing. I have coughed up a bloody mucus a couple times in the last 3 weeks and i have found it hard sleeping at night. I also had some bad abdomen pains around my belly button and then below my ribs on my right side. My doctor referred me to an infectious diseases clinic who have given me indigestion medicine and implied its all in my head. I have decided to go private and booked to see a rhuematologist tomorrow, however being off work money is an issue. Any advice on what I can do at the appointment to make this person listen to me and not think i am crazy?? Or other departments that may be of help? And any advice on how I can get the nhs to help me?

12 Replies

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  • Hi Vicky88,

    I'm sorry to hear that you have been struggling with your health and receiving inadequate care from your doctors. I hope that your appointment with the rheumatologist goes well. It is important to provide them with as much accurate information about your symptoms and medical history as you can. It is likely they will need to do a series of tests before they can reach a diagnosis.

    If it is an autoimmune condition that is causing your symptoms then a rheumatologist is the best equipped specialist to help.

    If you would like more information about lupus and how it is diagnosed we have a free information pack that you can request or download from our website at lupusuk.org.uk/contact-us/

    Our factsheet, 'LUPUS: The Symptoms and Diagnosis' may also be of interest and you can download that at lupusuk.org.uk/publications/

  • Thanks Paul. Unfortunately he didn't seem interested in my endless symptoms/past history and said it's fibromyalgia. After much research I relate to a lot but not everything, hence why I thought it was lupus (worrying my organs could become affected) so I think I will get on at my doctor next for any further tests. I have been given amitriptyline to start on and see if it helps. Can you give me any more information on this illness and medication?

    Thank you, Vicky

  • Hi Vicky, are you wanting more information about lupus or about fibromyalgia?

    I'm sorry to hear that the appointment didn't go as you hoped and you didn't feel listened to. You are entitled to a second opinion on the NHS, so you can ask your GP to refer you to a different rheumatologist if you wanted. It might be worth trying to get a referral to somebody who specialises in lupus. If you let me know whereabouts in the country you are, I may be able to let you know who may be closest to you.

  • I have done a lot of research into lupus already but I am always happy to learn more, but now I would like to get clued up on fibromyalgia as much as possible.

    I had to go private and couldn't even get a referral from my doctor originally but I will certainly keep trying!

    I live in newmarket, but i am also in Southend often (As family have been helping me) so either location is fine. Somebody told me on here that there is a good lupus specialist at Addenbrookes but again I am not sure my doctor will refer me on the nhs...

    Thank you for your help!

  • If you would like a free information pack about lupus we would be happy to send you one. You can request or download one at lupusuk.org.uk/contact-us/

    We also have a wide range of publications about various aspects of lupus that you can download or read at lupusuk.org.uk/publications/

    For more information about Fibromyalgia I would recommend that you visit the Fibromyalgia Association website at fmauk.org/

    You are correct that there is an excellent lupus clinic at Addenbrookes. One of the consultants their is Dr Frances Hall. It is worth asking your GP if they will refer you.

  • Hi Vicky

    Paul's reply is great regarding your Rheumy appt.

    I can just add I think you ought to get your chest looked at by your GP as you may have an infection. Your symptoms sound similar and coughing blood should never be ignored!.

    Good luck and hope you get answers soon. X

  • Thank you! He diagnosed fibromyalgia which adds up regarding to a lot of my problems but not all. And yes the coughing up of blood is one of my biggest worries. I had a third x-ray last week and I am going to try and push for a scan but my doctor just fobs me off to an infection clinic who have only given me indigestion medicine and dismissed my problems and concerns regarding my chest! After a trip to A&E last month I was told a possible chest infection and my doctor began me on antibiotics, but I was then sent to hospital and told to stop them. (This was before I coughed up any blood) The rheumy did refer me for a chest ct but I am struggling money wise due to being off work!

    Thank you for your advice. It's good to know that someone agrees with me and it's not just me worrying about nothing!

    :) x

  • Hi Vicki

    As your also struggling money wise because of your health you could also go to your local Citizens Advice Bureau . They will run a benefits check to see what help you could be entitled to and help you claim. It's so important you need that chest ct scan. You could also ask the CAB about hospital transport, . I hope you sort everything out very soon. X

  • Hi Vicky. I was sorry to read of your difficulties. Do you have access to another or other GPs? If so, it would be well worth seeing one or more of them to discuss why you are keen to be seen by a rheumatologist with a specific interest in Lupus (and, hopefully, Hughes Syndrome too - which can be secondary to Lupus in some people; see hughes-syndrome.org if you want more info), whether this is on the NHS (as it should, rightfully, be) or another private appointment. It took me years to get a correct diagnosis and I've seen many similar accounts on this Forum. In retrospect, I wish I had been more of a 'pain' - I was too worried about upsetting GPs - as I might not be in the state I am now in if I had pushed more earlier. Good wishes.

  • Yes it is very frustrating getting the right people to listen. I just want to talk to someone that has the right knowledge and can explain what is happening as it's gone on a very long time now. I am going to try talking to my doctor again and explain this in the hope I can get further help. Can I ask what problems you have and how you eventually got diagnosed? Thanks for your advice, I think it's definately worth bringing up hughes syndrome aswell as a possibility.

  • Hi Vicky. I was originally told that I had ME/Chronic Fatigue Syndrome, which I had my doubts about once I started reading about differential diagnoses. But the label/lack of interest from nearly all of the medical profession stuck. Then, after 7 years I was rushed in for emergency heart and vascular surgery and that then got a cardiologist interested, who then involved a rheumatologist, and so on. I have now been diagnosed with atypical Lupus, secondary Hughes Syndrome, a form of dysautonomia (my blood pressure can fall dramatically), and a mutation in one of my genes which affects the blood vessels. So... you don't want to go down that route! Not that you will, of course. However my case does emphasise why it can be worth pursuing a correct diagnosis. In terms of your own situation, it might even be worth going in via the Hughes route if nothing is opening up on the Lupus specialist front. The Hughes Syndrome Foundation (to which I previously sent a hyperlink) has a list of specialists with a particular interest. I would very much hope that any rheumatologist (not all of them are within that specialism) listed there would be able to make a proper assessment re Lupus, too. Best wishes.

  • Understand that there was a massive campaign by the US Center for Disease Control to promote SEIDS (systemic exertion intolerance disease formerly chronic fatigue syndrome) as a mental disorder. This served insurance companies who wrote mental disease limitation clauses into disability policies so that if a SEIDS patient filed for benefits they would have to fight for benefits and they would only last for two years. See the book Osler's Web. This propaganda was taught to physicians and many still believe it despite extensive evidence that these are real physical diseases. So you just have to change doctors to someone who is more knowledgeable.

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