What's wrong with me :(

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Han1234567
Han1234567 Member Posts: 2
edited 30. Mar 2017, 02:35 in Young people's community
Hi!! I'm hannah and I'm 18.

I haven't got a diagnosis of anything and I'm really at odds as to what's wrong with me and was hoping that someone might have some first hand advice!

I have a family history of rheumatoid arthritis (mother, uncle cousin etc)and psoriatic arthritis (cousin).

For the last 2 years I have had gradually worsening joint pain. Initially it was just in my hands and they would get red, swell and I would feel a burning pain inside them. Over time this spread to my toes but with my toes they never swell like absolutely never swell- they go red but they don't swell. Likewise with my ankles (they don't even go red they just hurt a ton) and with my knees (go red but don't swell).

On top of these general joint problems I have had Reynolds phenomenon, extreme fatigue (to the extent where I would sleep for 14 hours at night plus 2 hours in the day when I'm in a flare), I get rashes on my fingers and on my face and get mild fevers.

I don't get any morning stiffness really if anything it's very short lived- my fingers are quite bent but it seems like the bones have caused the bend. I also don't do any sports really and nothing that I can think of to cause osteo-arthritis and like I said I'm 18.

I have seen my doctor about 6 months ago and had blood work done but it all came back normal so I haven't really had it looked at further- he did really make me feel quite bad tbh like he didn't believe me :( but it's getting to the point where I take the maximum painkillers that I can a day and I still find myself missing days of school to sleep and crying in pain!! It's just horrible and I'm at odds as to what to do

I'm not sure this is in the right place so sorry in advance!!

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  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi Hannah,
    I'm sorry to hear that you're having such an awful time presently and that your hands and feet are so painful. It seems to me that you need to go back to your GP and ask for a referral to see a rheumatologist.
    There are lots of situations where blood tests will come back as normal despite the fact that you may well have an active inflammatory condition going on. This is certainly true in conditions such as psoriatic arthritis. I think it would also be worth you giving our helpline is a ring, the number is a free phone number it is 0808 800 4050.
    As regards your pain levels and dealing with your pain right now you might find this section of our website useful https://www.arthritiscare.org.uk/living-with-arthritis/managing-pain-and-fatigue
    you might also find the website Authur's place useful http://arthursplace.co.uk/ as it is designed for young people with arthritis.

    Having said all that our members here are extremely supportive and I'm sure that they will be able to give you some useful advice from their own experience. Please let us know how you getting on and keep us up-to-date with your news. Don't suffer in silence!
    Best Wishes
    Sharon
  • wazz42
    wazz42 Member Posts: 233
    edited 30. Nov -1, 00:00
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    Hi Hannah,

    Welcome from me too. Like you I have Raynauds syndrome from birth really, the health bods seem a bit iffy regarding it - I've had it called R disease, then phenomenon and I think it's a syndrome now!

    The fatigue and pain associated with it can be very bad, I know. It is also an autoimmune problem like RA and PsA.

    Go to a different dr in your practice, tell them just how it is when it hurts, tell them about Raynaud's, tell them your family history and seek a referral as Sharon says.

    Can you take a family member along for support? If you wanted proof you could get someone to take a photo of your hands when they are bad.

    Keep posting and let us know how you get on

    Wazz
  • frogmorton
    frogmorton Member Posts: 29,424
    edited 30. Nov -1, 00:00
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    Oh Hannah!

    You poor thing!

    I agree with the others go back to the Drs, see another Dr if you can and maybe take someone with you, your mum maybe? Someone who knows what is happening and witnesses your pain.

    They ought to take you seriously this time, (most of us have had to go back more than once to be honest to get help), and hopefully do more than bloods. Young people normally have to be dragged to the Drs kicking and screaming!!

    Do let us know how you get on

    Toni xx
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