Still no diagnosis years later, what does your joint/muscle pain feel like? | Lupus Forums at The Lupus Site
  1. As you can see we have transferred to new forum software which is much more stable and will eliminate problems that we had with the old software.
    *** To login you will all need to reset your passwords. To do this simply click login (top right) then click the forgot password link. You will receive an email with a link to reset your password. You can then use the forums as normal.
    Dismiss Notice

Still no diagnosis years later, what does your joint/muscle pain feel like?

Discussion in 'Not Diagnosed Yet?' started by MrDave92, Sep 19, 2019.

  1. MrDave92

    MrDave92 Junior Member

    Hi all,

    I posted on here around 5 years ago when I was going through tests for autoimmune issues, including lupus. I essentially came ill following some dental work, and it seems that I had a reaction similar to multiple chemical sensitivity. I became extremely fatigued, dizzy, experienced aches and pains in my joints and muscles, twitching, had facial rashes, ringing in ears, stuffy nose amongst other symptoms. I had a big deterioration in my mental health as no one could tell me the cause of my issues. It sounded similar to lupus, however, I was tested for this and everything came back completely normal or negative, including a full lupus panel, rheumatologist meeting and a skin biopsy which showed seborrheic dermatitis. I don't believe the dermatologist did the band test, which concerns me.

    My symptoms have pretty much stayed the same over the years and I've battled on without a diagnosis. I'm now considering going back to the doctor to have bloodwork repeated. It should be said that I can go in the sun with no ill effects and the malar type rash on my face hasn't appeared or worsened. The pain jumps from joint to muscles in a matter of seconds and doesn't last any longer than this in one place, along with muscle twitching. I'm just wondering what the pain of lupus feels like and whether this matches up? Does the rash look similar to what you could expect with lupus? It doesn't worsen from sunlight or using a sunbed, I do get a flushed face sometimes after a hot shower or change in temperature but that's about it nowadays.

    Any information would be appreciated. Thanks

    Attached Files:

  2. Tired

    Tired Member

    Mine looks different than yours...half of one side of my face will be bright red, almost purple. The other side of my face and my nose will match it. I also break out in the same rash on my upper arms and chest. It's always following extreme stress, a flare-up, or exposure to sunlight or bright artificial fluorescent lights. I'm always exhausted with muscle pain after being in the sunlight for even a short period of time. My windshield in my car is not tented, and even the smallest amount of sunlight hitting my hands/forearms is enough to cause symptoms later.

    However, I've not officially been diagnosed with lupus either, but rather, a lupus-like MCTD. I am on methotrexate and folic acid, which seems to help a lot. I see a rheumatologist regularly. It's really important to find one who will treat your symptoms, not the diagnosis. It may be several years (or longer) before you have an official diagnosis. Have you gotten a second opinion from a different rheumatologist? Do you have a good primary care doctor who can run tests for you?
  3. MrDave92

    MrDave92 Junior Member

    Thanks for getting back to me. Mine does seem atypical in that it doesn't worsen with sun exposure, if anything it seems to have cleared up. In terms of your pain, does it stay in one place for a while or constantly move around the body? I'm visiting the doctors next week, so hopefully they will run some tests, although I'm not sure they will since everything was clear last time
  4. lazylegs

    lazylegs Moderator


    Rashes can vary so a biopsy is a good way to see if it is Lupus or not. You've had one in the past but things can change with time. The fact that yours gets better in the sun would lead me away from Lupus as a possibility. Mine would only get worse and be accompanied by several other symptoms as well.

    Each person is different but with most people I know the pain moves around. It may start in one knee but I know it will go to the other and bounce around to different joints. When it does settle in a joint mine is usually bilateral.

    Good luck with your upcoming appointment.

    Take care,
  5. MrDave92

    MrDave92 Junior Member

    Thank you for getting back to me Lazylegs. With me, the pain just hits one spot for a few seconds and moves all about from joints to muscles. It never stays and doesn't impact in a way that makes any movements painful. It's more of a sharp pain or ache. I went to my GP and thankfully she was very understanding. She said it made sense to re-do tests as it had been quite some time so I'll be getting some bloods taken next week. She said she wanted to make sure nothing else other than CFS was going on. I'm a little nervous and not sure which bloods will be ran but at least she's looking beneath the surface
  6. lazylegs

    lazylegs Moderator

    Good luck with your blood tests.
  7. Tired

    Tired Member

    Mine has stayed in one place, mostly. My hands and feet seem to be where I have most of the pain. My fibro (which I also have) pain is more widespread and can move around/change.
    wolf1 likes this.
  8. MrDave92

    MrDave92 Junior Member

    Blood tests were completely normal and ANA negative, which I'm pleased about but search for answers goes on!
  9. MissDaisy 1

    MissDaisy 1 Member

    I rarely have pain but when I do it's usually my big toe or chest for joint pain. Last spring I had a terrible flare and the muscles in my right arm were like they were on fire. If I could have ripped my arm muscle out, I would have. Yesterday I did have pain in my right ankle and foot. It felt like I pulled a muscle.

    DX: RA/Lupus/Stage 3 Renal disease

Share This Page