Teenager with fibromyalgia and enthesitis related arthritis

Hi, My 13 yr old daughter has fibromyalgia ( although in kids they call it chronic pain syndrome and bio mechanical pain) and evolving enthesitis related arthritis.

I've found the whole process of getting a diagnosis and treatment incredibly frustrating, and would really value any input from anyone else also suffering from fibromyalgia and ERA.

She is currently on gabapentin, amitryptline, diclofenic, and now methotrexate injections.

Thanxs

4 Replies

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  • So sorry to hear of your young daughter, and you, going through this. The medication is the usual combination we have, the only advice I can offer is to look at the NRAS site also on Health Unlocked they have excellent advice there also. Others here will be helpful too I am sure. All best wishes. Lou xx

  • Thankyou x

  • Hello Sammillion2one and welcome to our friendly fibro forum where you can get help, advice and support.

    Have you seen our Mother Site fmauk.org ?

    Here you can get a wealth of information about the condition, treatments and local support groups.

    I am sorry I have no personal knowledge of your daughter's condition ERA but the medication she is using is tailored for fibro. I am guessing the methotrexate is because ERA is an autoimmune condition?

    I am wondering if this is related to Juvenile Arthritis as there are specialised sites and support groups for that. Also, if you enter Juvenile arthritis in the search box above there are members who are or have been connected with that.

    I can understand your frustration in looking after an unwell child and taking so long for a diagnosis. I wish you and your daughter well and hope that our lovely members here can help you.

    Kay

  • Hi Sammillion2one

    I really am so genuinely sorry to read about your daughter and I have pasted an excerpt below from the *Aboutkidshelath relating to Enthesitis-related arthritis:

    *It is a disease that leads to pain, swelling, stiffness and loss of motion in the joints. There are many different types of arthritis. Enthesitis-related arthritis (ERA) is one type. Enthesitis is swelling or inflammation of the entheses, the connective tissue where tendons or ligaments attach to bone.

    As for Fibro, I have been hearing more and more about children having chronic pain syndrome but there is never any answers as to why they are developing this?

    I want to sincerely you both all the best of luck, and please take care.

    All my hopes and dreams for you

    Ken

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