Undiagnosed and rare conditions
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body pain, joint pain, neck pain, fatigue and rosacea but negative for lupus and arthritis

hi, im a new member looking for someone with similar symptoms 

two years ago i suffered an intense hedache and neck pain, days after i developed joint pain. It lasted 6 months, then dissapeared then it appeared again. For the last 8 months i was okay, with no pain or fatigue, but the pain is here again. 

i have a stiff neck, my shoulders hurt a lot, specially in the nights, its like a burning on my bones, my heels also hurt, my whole body hurts..   i feel like a vibration of pain  going throught my whole body. its not like everything hurts all the time, but like always there is some part of my body hurting . The pain is not focalized it comes and go along the day. 

The firts months i stayed in bed all the time, then i managed to stay awake and active. sometimes the pain was so hard that it hurted puting my arms on the table or even being touched. now is much more manageable 

Doctors has discarded lupus (because of a malar erythema i developed 6 years ago, which was diagnosticated as rosacea like a year ago) and arthritis, even reumathic fever.

I also suffer depressión which get worse everytime the pain comes back. 

doctors said it cant be fybromialgia since the pain does goes away from time to time.. 

it really feels like an outbreak everytime i feel all this symptoms,.. like the feeling before having a flu, sometimes even with fever


  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @kikikat   Pleased to meet you.

    Thank you for joining and sharing.

    Sorry to hear what you are going through.

    I am one of the team of Community Champions.  We advise, guide and help members of our community.

    Unfortunately we are not medical professionals.  Under our community guidelines can not comment sorry to tell you this.

    I do have links on your mental health condition.

    If your feeling depressed.

    Always get support with that comes advice, guidance with well being health and benefits .

    Used these.




    Might not be in all areas. You can self refer or speak to your GP.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
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    Nutrition, Diet, Wellbeing, Addiction.
  • avakarlssonavakarlsson Member Posts: 332 Courageous
    Hi Kikikat 

    Sorry to hear what you have been and going through.

    I have chronic neck pain I know the feeling it’s just unbearable and the pain is so chronic, I also have hip pain too which is chronic not good at all. I never can have a full night proper sleep, I’m always up in the night due to the pain. I’m having a ultra articular hip injection Friday coming so I’m just hoping that helps my hip pain as then they know what is wrong with my hip and then they can do treatment, I am also waiting to have physio for my hamstring muscles in my legs as they said I have got tightness there, I have had loads of physio before but that didn’t work, so hopefully this will work as I’m seeing a hip physiotherapist and hopefully it will improve my posture as I can’t stand straight and they think that’s why I’ve got the neck pain due to the posture. 

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @kikikat and a very warm welcome to the community! I'm sorry to hear you have been experiencing so much pain and that it had impacted your mental health.

    Here is a website that you might find useful: https://livewellwithpain.co.uk/

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  • HelensjoHelensjo Member Posts: 1 Listener
    Hi Kikikat
    Your symptoms sound very familiar to mine, I have Sjogrens Syndrome but my bloods always come back negative, which isn't uncommon with the disease, it likes to be awkward that way, Drs tend to think it is Just Dry eye and Mouth, however you don't even have to suffer with either. Have a look at Smart Patients, it is run by a Doctor who has Sjogrens, even if just to get some valuable advice and support, there are some profound publications for assisting people with diagnosis and recognition from medical professionals. Good luck.
  • HoineyHoiney Member Posts: 1 Listener
    Hi Kikikat,

    Sorry to hear what you are going through.,
    I had all your symptoms for many years plus some other symptoms later.  Because these are unspecific, can have so many causes. I don’t say that you have the same condition, just I share mine. After an accident everything become even worse and took another 16 months to be diagnosed with Addison’s Disease. But now I’m getting better every day with my neck pain and headache gone and no rosacea. I have tried everything for rosacea, including laser, diets and antibiotics. But now I know, when I’m low in cortisol, I’m getting red. The typical lupus butterfly. That’s why I thought I have lupus. I was suspected for rheumatoid arthritis as well, when I was unable to lift my arms and I was limping for six years because my ankle. Since started the treatment all gone, and no arthritis diagnosis, or rosacea. Because my symptoms were unspecific, took very long time to be diagnosed after ending at A&E. 

    Don’t give up. 
    Good luck 

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @Hoiney!

    Thank you for taking the time to share this with us. How have you been finding lockdown? :)
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  • KandejKandej Member Posts: 5 Listener
    Hi Kikikat
    I've only joined this week, when browsing through the posts on here I noticed your symptoms are very similar to mine. My symptoms started with the Rosacea and painful knees about 30 years ago, I had these symptoms and other aches only, about 10 years later my symptoms got worse and worse, unexplained aches, a rash that spread all over, the feeling of insects crawling all over me, occasional "funny turns" where I'd feel faint, hot and just felt "odd" , extreme tiredness, just getting a shower would tire me out, also depression. Dr tested me for Lupus, Leukaemia, Addison's, and many more, all came back negative. He said nothing wrong and its all in my head so diagnosed CF/ME and left me to it. I pushed to see a Dermatologist who was great, She'd had no clue as to what was wrong herself so but me on a list to see a team of specialist Dermatologist's who travel around Europe together looking at unusual cases hoping that one of them had seen it before. I sat in a room in a bikini for them to all come in and have a look and ask me questions, luckily one of them said Mastocytosis. I had all the tests and yes I was positive! At last an answer, that was 13 years ago. At the time it was just in my skin and slight in the bone marrow. Over the years its progressed to to the systemic type; fully in the bones and also my digestive system, its caused osteopenia and  I break bones easily which is a pain as I have to be so careful doing anything. Since then I've read up on mast cell conditions so much, I've got the type with the genetic C-kit mutation(systemic Mastocytosis) but the other type MCAS has nearly all the same symptoms with out the mutation, they think its really common but as Dr's have rarely heard of it they wouldn't know to test so people are getting fobbed off things like CF or Fibromyalgia! Since starting treatment my symptoms have eased, but it took a long time for diagnosis, 
    Good luck and hope you get a diagnosis soon, keep pushing them
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