Sarcoidosis And Pain In The Big Toe – A Poll

At the last sarcoidosis support group meeting , pain in the big toe was a common factor among most of the participants, and all have sarcoidosis in different areas. I would think it would happen in sarcoidosis of the nervous system, but why the other forms? There was no explanation offered as to why. I am just wondering if anyone else experiences a sharp pain in their big toe that goes after a short while. Please take a moment to answer the poll below to see if there is any correlation to a particular type of sarcoidosis and toe pain. Of course this is totally unscientific.


For the results of this poll, please click here

8 Comments Add yours

  1. carolee888 says:

    This topic really surprised me. I had horrible pain in my big toe. The joint area got red and swelled, I could barely hobble around. The x-rays were diagnosed as arthritis. My first operation was supposed to put an joint implant it. My insurance only let me see a podiatrist. I begged to see an orthopedic surgeon. The Podiatrist lied and put in a half joint and then dared me to “mess it” up. The most interesting thing was that joint was destroyed but the podiatrist could not describe what he saw when he removed the area. He kept saying “It was unlike anything that he ever saw”. You would think that with that observation that he might send it for biopsy. No, nothing,

    Two years later, still in terrible pain, I had changed my insurance company and finally saw a foot specialist in orthopedic surgery. He took out the demi (half) joint and was ready to be a witness in a lawsuit for me!!! Anyway, he put in a metal plate with screws and my big toe is much shorter than before after two surgeries. There is less pain when I stand or walk but the scar swells and gets red most of the time.


    1. Basil Rene says:

      Amazing! People in the support group meeting said they were all told it was possibly gout, although the tests prove negative. Baffling.


  2. Patricia (Patty) Robert-Aldous says:

    I was diagnosed twice in 4 years in two states by two different tests. The first was in NC with. CXR and CT scan. Then I was sent to a pulmonologist who told me he highly doubted I I sarcoidosis. So he never did the bronchoscope that I sent to him for. Then I moved to NY and 2010 I had a lump come up on my inner elbow and was told it was a cyst. I went to have it excised and the surgeon told me it looked like lymph tissue not a cyst. A few weeks later the path report came back positive lymph tissue for sarcoidosis. I have developed a cough and diabetes. I have weight Loss and great toe pain. I’m on singular for the cough. I also have a lot of joint pain, fatigue, depression. Well that’s my story. In short anyways.


    1. Basil Rene says:

      Thanks for checking in Patty. Sorry that you become a member of the club. I hope that you have your sarcoidosis under control. Are you seeing a sarcoidosis specialist now?


    2. Anne Hyland says:

      Hi I was put in hospital Easter Sunday with plurosy and pneumonia and the so called specialist because of swollen lymph nodes in the chest had a pet scan and came back and said I had cancer and told me and my family that I had 3 months to live. after 5 and a half weeks in hospital I went and saw my own lung dr who had another pet scan done that came back lymphoma, then had bone marrow test and bioposy of lump under arm. These tests came back not lymphoma, but sardoid. I am now on predison which plays havoc with my diabetes, just had cat scan to see how it is going. See specialist on 16/12. will know then+


      1. Basil Rene says:

        Hi Anne. What a nightmare! Sorry you have sarcoidosis, but also glad you don’t have cancer. May I ask which part of the world you are? I am just fascinated that professionals are still making sarcoidosis misdiagnosis.


  3. jacqui says:

    I am also on this strange and changing journey sarcoid. I was diagnosed in November 2012. Thought I had heart issues but bingo it was saroidoses in my chest. Mild case stage 1 nothing to be to concerned about , they say. I also have had previous and ongoing issues /problems with my left knee which I now beleave is sarcoid as well. And yes I to have been having very sharp pains in the first joint of my left big toe. Infact I have had issues with pain and numbness on the left side of my body and have now been told that it is in my nerves. Oh and that I am now stage 2, but still don’t worry it will all go away. Two weeks a go I had an MRI of my brain and spine that does not show any signs of sarcoid,… they say. But there is signs of osteoauthritis and T1 and T2 noduals… mmmm.
    Over the last three weeks i have had pain in my lower back which has increased to the point that i have just spent this week flat on my back on morfene and anti inflamitries.
    The worst thing about the back pain has been the relentless dry cough that makes you feel like there is a knife being stabbed into your back. Back to the doctors on Monday for the next exciting chapter in this strange adventure….


    1. Basil Rene says:

      Hi Jacqui. Thanks for dropping by and sharing your story. I am sorry that you are going through this, but are you seeing a regular doctor or are you seeing a doctor that specializes in sarcoidosis. There is a big difference in how your treatment protocols will be approached. Also, I know it is daunting to be going through this, but think positively and have faith in your body’s own ability to heal itself. Only you can heal you. No one else. They can point you in the right direction, but all of the healing happens in you, through you and by you. I started out with stage 4 sarcoidosis of the lungs with severe scaring and my last x-ray shows that my lungs are a lot clearer than they were before where they can actually see into the lungs. When the sarcoidosis went to my heart I had a 20% ejection fraction and told I would need a heart transplant within five years and I had a 50% chance of survival. It is now six years later and I have the same heart with a 65% ejection fraction. I wish you well on your journey and send healing thoughts your way.


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