Navigating adolescent CFS

Everyone’s growing up. November 27, 2012

Filed under: CFS Diagnosis,CFS Symptoms — parentingcfs @ 10:36 am
Tags: , ,

It often takes an incident to make you realise how much you have changed.

Today I took my 11 year old son to the doctor because he has been having a lot of pain down the backs of his legs. It’s not something his sister (with CFS) has experienced BUT:

1) he is almost the exact age she was when she first became ill

2) he is growing fast (as did she)

3) it is highly likely that our girl’s condition, whatever it is, includes, at the very least, a genetic predisposition (ie my genes + my husband’s genes + ? = perfect storm)

4) he has been experiencing occasional dizzy spells, headaches and near constant fatigue for over a year

so you may understand that we are a little concerned.

So perhaps you’ll also understand that when this GP, whom I like very much, said he couldn’t explain why our boy was having these pains (especially only in his calves and hamstrings) but that he wasn’t worried, I didn’t exactly feel relieved.

Two years of coming to terms with the fact that no one, even doctors, has all the answers and now I just breathe, say thank you and keep looking.

It’s not paranoia, it’s educated realism.

Anyone else have experience with this kind of leg pain, in both legs?


13 Responses to “Everyone’s growing up.”

  1. keena Says:

    Yes, I have leg pain but thought it came w/ having Fibromyalgia but it very well could be w/ the CFS b/c the fibro id very mild case. If I do too much, my legs hzve a deep ache that takes days to recovet. Good luck! I will pray for your son and your family.

    • parentingcfs Says:

      Hi Keena. Thanks for your reply. My son’s pain is constant when standing upright so I think it’s a little different to what you describe? If he has to stand for a long time it can get unbearable. I hope you don’t have to do too much too often but I know how little that can be. Thanks for your prayers.

  2. Els Bakker Says:

    If a doctor can’t find anything, try the naturopath. If he is growing fast he could be for example low in certain minerals. And also the osteo will be able to see if these are “growing pains”

    • parentingcfs Says:

      Hi Els. Thanks for your thoughts. I have started my son on carnitine and CoQ10 while we are waiting to see the naturopath my daughter sees. Osteo, physio and doctor have now all said not growing pains but can’t tell me what it is ! Have a few exercises to try. Talk soon : )

  3. Tanya Carter Says:

    Matt, who is 12 now, has had this kind of pain over the last year. I assumed it was growing pain, or the referred pain from the growth plates. Some days it is worse than others, in the morning he hobbles around until his legs “warm up” but he does say it is always there. A physiotherapy assessment with a good physio will give you answers asap, or even a podiatrist. Fingers crossed that is all it is.xx

    • parentingcfs Says:

      Hi Tan! Sorry to hear about Matt. Yes I just assumed growing pain to certain point but seeing him reduced to tears just standing on the cricket field made me decide it was time to investigate further. Physio, osteo and dr all say not growing pains. Wait and see for now with a few exercises and supplements. Hope to see you soon…we will be over in Jan. x

  4. I can completely understand why you would be worried Annie. Hope all is ok with the lovely boy.

    • parentingcfs Says:

      Thanks so much Nic. My heart is a bit sore at the moment. Love to all your beautiful family and let’s catch up early in the new school year (Crazy to try and work anything out at this time of year I think!) xo

  5. Sue Jackson Says:

    When Jamie and I get CFS achiness, it is always primarily in our calves. But it is a flu-like achiness not a sharp pain. Sorry, probably not what you wanted to hear. You know we have been through this ourselves, so I understand your concerns and emotions completely. Just remember how things have turned out here – Craig’s CFS started mild and has stayed that way, with all symptoms 100% relieved with just a low dose of Florinef. Fingers crossed and thinking of you all…


  6. Keli Says:

    My son has had leg and hip pain, he suffers from pots, has many other s/s, I found treatment that Dr.Rowe from John hopkins and a Physical therapist Rick Violand are doing and we found someone in our state who talked to them and have now started doing the treatment and my son in a matter of months is starting to go back to school, and most s/s have gone away, we do have times we still get some s/s but he is doing so good from how we were just a few months ago bed ridden, he still goes to physical therapy and is still tired, but started going on sleep overs again and spending time with friends, this was huge and I believe its related to this treatment, he does take beta blocker but the leg and hip restriction can cause increase in s/s for these kids when stressed, we are followed by Mayo clinic , but have combined these treatments and I am starting to see him getting his life back

    • parentingcfs Says:

      Keli, so great to hear of that improvement! Yes I believe Dr Peter Rowe’s treatments are going to solve a lot of problems…unfortunately the PT protocol is not widely available. Hope it will be soon. Thanks for sharing your story. Do you know of our parent support group on facebook? let me know if you’d like to join.

      • keli Says:

        I would like join on Facebook thank you.
        Dr. Rowe’ s treatment is being published in detail any time, we are waiting for it, Rick Violand is going to let me know when it’s out. This has been huge in our house, it’s very hard to watch your children in pain,I have 2 kids with this also

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