Freaking out

Hi, I just joined and I'm hoping I'm able to get the help I need. I went to the Dr 3 months ago and was talking to the Dr about what has been going on. I asked if he thought I could possibly have Lupus because I have almost every symptom. Well here it is almost 4 months have gone by and my symptoms are getting worse. My body hurts me so dang bad (arms, back, knees) I've developed a rash a few weeks ago on my face and now it's on my neck and chest. My ankle's are starting to swell a bit and I have tiny pinsize red dots around my ankles. I've been taking advil for my body pain and it does help for the most part, but I know it's not good to take it a lot. My Dr appointment is at the end of the month, but I'm going to call Monday and see if I can be seen sooner. Any advice on how to talk to my Dr about my concerns and feelings? I'm 95% sure I have Lupus. Thank you in advance.

6 Replies

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  • Hello Meadows8, welcome. I am sorry to hear how poorly you have been feeling. It can be distressing having so many symptoms.

    Writing everything down in a chronological order of how symptom s appeared and your past medical history with dates might help. Some people use a time line structure. If you have any past blood test results or previous diagnoses if any other diseases, add them too. Any photographic evidence of things like rashes will help, especially if they are clearing by the time of your appointment.

    Avoid vague descriptions such as ' I hurt all over'. Try and describe pain in terms of exactly where, when it began, how often it occurs. Any triggers or ameliorating factors. Whether it moves etc...

    If you have joint swellings then photograph them.

    Ask for a full autoimmune screen or referral to a rheumatologist.

    Some of these suggestions might help structure your appointment so you express your concerns in an orderly and logical fashion, and help you describe your symptoms better.

    Good luck. I hope you have a constructive and thorough consultation, but expect it to be a long process narrowing down exactly what the problem is.

    Take care and let us know how you get on.

  • You've had great advice from RubyTuesday2. I keep a daily health diary in a note book now, as we think we'll remember everything but when it comes to appts we don't, so that's been helpful. I have been taking photos for a few years, rashes, hair loss, swellings etc, I got these printed off and take with me too. I saw a new Rheumy recently and he said he'd not seem a real photo for a while and chuckled but then afterwards said he found it easier than digital and by the end of my appt he had them spread right over his desk. Have a look at the Lupus UK website there is a lot of good advice on there about diagnosis and symptoms etc. Finally read about lupus, arm yourself with the facts. And stay in touch here. This site is amazing, people with years of experience who want to share it and help others. Best wishes.

  • Don't worry about taking the Advil. We are "special." I take pain relievers all of the time. I just started trying Aleve and it does seem to work better. My liver and kidneys are checked very regularly (every 3 months or so), and so far my body doesn't mind all of the meds. The pain can cause you to get down. Try a heating pad and a sports rub? I use Deep Blue by Doterra. Also, if you have a whirlpool tub, that seems to help too.

  • Hi dear. You received all the best advice you possibly can. I can only add: if your ankles are swelling, check your urine color and smell, if you feel urgency or sometimes you have little embarrassing accidents and tell your Dr. Every little symptom counts to make a diagnosis.

    Brace yourself for lots of blood tests (I hate needles) and rest as much as you can. Best luck!

  • You have to push and push I am afraid. I would keep it brief but strong - you should have been referred months ago. I found Docs get annoyed if you tell them what you think. So tell Dr your symptoms are getting worse. DONT say the Lupus word - most of them are scared by it as it is not well studied by the GP - plus the symptoms are so overlapping with other auto immune problems. Good luck - keep firm and don't self diagnose ! Cas70

  • Hi Meadows8,

    Welcome to the LUPUS UK HealthUnlocked Community!

    Muscle/joints aches and pains and face/body rash are symptoms that can be associated with lupus. We offer a free information pack that contains information on the symptoms and diagnosis of lupus which you can download or request here: lupusuk.org.uk/request-info... . You may want to take the factsheets and guides provided in the information pack to your next appointment to aid you in explaining your symptoms.

    We published a blog article on getting the most out of your medical appointments which you can read here: lupusuk.org.uk/getting-the-...

    Please keep us updated, all the best!

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