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Advice please

Posted , 4 users are following.

caroline16860
caroline16860

This post is about my 14 year old daughter. She is average weight and height for her age and very active. She's on the school netball team and competes for the school in other sports.

Last year she started complaining that she was aching pretty much all over.

I thought maybe growing pains and just dismissed it as that at first. We then found that if she did any type of sports she was hurting more afterwards than she normally was. She is struggling to walk, get up stairs, bend down (watching her walk is sometimes like watching a pensioner) we realised it was more serious at this point and late last year we went to the doctors who referred my daughter for some blood tests, they came back clear but there has been no improvement in Abbie's movements so we've been back to the doctor a few times since then. Last time we went she said she was referring Abbie to a specialist at hospital to be tested for possible childhood arthritis and we've had an appointment through for the 19th of May.

Why I'm posting is because Abbie's symptoms to me don't really sound like arthritis, the pains aren't really in her joints like I always thought you would find with arthritis, it's all over, thighs, lower legs, feet, arms, hands, back, stomach, shoulders, literally everywhere and she gets headaches and is constantly tired, even if she's had a good sleep.

She was asleep at 10pm last night up at 7am this morning and is currently in bed asleep again where she's been for the last two hours.

I was speaking to a friend earlier and she said what I was describing sounded more like Fibromyalgia

than arthritis. The doctor has never mentioned fibro to us before and I don't really know anything about it and google isn't really very helpful so I was wondering if you could possibly help. I'm concerned that the specialist may only fixate on arthritis and totally miss the fact that it could be fibro.

Should I mention it when we go? did any of suggest it to your doctor or did your doctor first mention it to you? Were you diagnosed in a similar way?

I'm really concerned for her and the more I read online about fibro the more boxes it's ticking I'm worried about it taking years to be diagnosed as she starts her GCSEs next year and I don't know how she will manage or if school will be helpful.

Thank you so much xxx

0 likes, 4 replies

4 Replies

  • Oompa
    Oompa caroline16860

    Posted

    Hi Caroline, sadly there is no clear information about fibromyalgia, but you're right in thinking as all symptoms point towards that. Fibromyalgia is attributed to long-term pain and my gp never suggested it could be that, 4 years of chronic pain, lots of horrible meds, as well as physio and the thousands of pounds I paid for additional treatments it was my physio who having seen me, heard about the depression and anxiety as well as discussing the mental fog suggested that it was fibromyalgia. I would suggest to your gp that you think it's that, the unfortunate thing is no cure just managing it. Hope she feels better soon.

  • Magpie2me
    Magpie2me caroline16860

    Posted

    Hi Caroline. Sorry to hear that your daughter is suffering from ongoing pain. It certainly sounds like the symptoms of Fibromyalgia. You would need to ask your doctor to refer you to a Rheumatologist in order to get a corrrect diagnosis. At least knowing that this is what you are dealing with, can help you manage the condition. Like many chronic conditions, there is yet no cure, however it is possible to cope with this challenge. I have had Fibromyalgia for over 35 years now and I have still had a somewhat productive life. Learning to accept her limitations will greatly help her to manage this. Often Chronic Fatigue goes hand in hand with FM. So she will need to pace herself and listen to her body when it tells her to stop and rest. We have all found that Epsom Salts baths help with the pain and tend to relax the muscles since it consists of Magnesium. A healthy diet with the least amount of fast foods, sugar or empty calorie foods, can greatly strengthen the immune system as well. Managing stress is an absolute must with those who suffer from FM. I personally have managed the condition without medication. I only take an Ibuprofen when I have a terrible migraine but otherwise I try natural methods such as Remedial Massage, Homeopathic medication, some supplements like Curcummin, making sure I get enough rest and sleep, drinking lots of water, sun baths since Vit D is crucial to our well being, and gentle walks. Other sufferers do take medication and they would be in a better position to give you advice in that area. This condition is manageable Caroline and I know as a mother you would be very concerned for your daughter. Once you have a correct diagnosis, I cannot emphasise more, that acceptance of our limitations is crucial in coping. Putting things into perspective I always think that some have it much worse than my own health trials. I will email you as well regarding another supplement that has helped me tremendously. All the best Caroline. Your girl has a loving mother which is half the battle won. Warmest Regards, Maggie xx
    • caroline16860
      caroline16860 Magpie2me

      Posted

      Thank you so much for your reply.

      I'm going to try get her a doctors app this morning. She awake late last night crying in pain, didn't go back to sleep until 6:10am and is now awake crying again. She's such a tough cookie that seeing her like this is so hard, she never crys. My biggest fear is that because she's so active and sporty, if she has to stop this may cause depression, she's never been even down before she's such an outgoing girl.

      I will update after we've been to the doctors, I feel we may have a fight on our hands to get her diagnosed and school is on my back about her having time off school but I will fight for her every single step of the way xxx

    • julia44010
      julia44010 caroline16860

      Posted

      Don't give up until you get a firm diagnosis. When I was a child I started getting pain all over like your daughter. I was told it was growing pains. Then when I was older the doctors said the pain was because I had my first child too young. Then as I got older they came up with one faulty diagnosis afer another. Finally, after 60 years of suffering I have a firm diagnosis, fibromalgia. I have been able to lead a full life, I've always been able to work and I've had 5 children, but I can't count the number of times I locked myself in my office to cry in agony and try every position I could think of to lessen the pain. If only I could have been diagnosed earlier and received appropriate tratment it would have saved me years of unneccesary suffering. So INSIST that your daughter visits a pain clinic, because they look at all possibilities. Rheumatologists consider rheumatisme, osteopaths will think of bone disorders. You need someone with an open mind who will look at ALL of your daughter's symptoms and come up with an unbiased answer. I really feel for both of you. Take care

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