Posted by: christinelaennec | June 9, 2013

A cautionary ME/CFS tale (with happy ending)

A stunning rainbow.  February 2012.

A stunning rainbow. February 2012.

Regular readers will know that my teenage daughter, the Dafter, was diagnosed with ME/CFS in February 2012 and has been battling to recover ever since.  By mid-April of this year, she was able to leave the house every other day, was beginning to be able to read or do art a few times a month.

And then, she began to get worse again.  By the end of May she was hardly able to leave the house, much less get dressed and downstairs before the afternoon.  She was experiencing breathlessness, terrible itching, and awful leg cramps.  Last week she was hardly able to cross the landing to the bathroom without collapsing.  She was very, very frightened.  She is well aware that there are some people, including children younger than herself, who have such bad ME/CFS that they are tube-fed (see the Association of Young People with ME’s Functional Ability Scale).

Last Wednesday she was admitted to hospital for tests, as she hadn’t had bloods done in a year.  By the evening, the senior doctor told the Dafter that they could find nothing obviously wrong with her, and suggested she try Cognitive Behavioural Therapy again as “you need to train the mind to control the muscles”.   The doctor then decided the Dafter should go home.  It staggered me that a doctor who had just seen for herself that the Dafter could barely take three steps from her wheelchair, clearly gave no thought whatsoever to the Everest-like task that getting her home and up two flights of stairs represented.

We did indeed make it back inside in before 9 pm, in a state of some depression.  The Dafter was really scared to go to sleep, fearing she would hardly be able to talk in the morning.  Thursday we were both subdued, trying to reconcile ourselves to the situation.  And then at 5:30 pm, there came a phone call from the GP surgery:  please come pick up a prescription for iron tablets, 630 mg per day.  The Dafter was severely anemic!

The morning after she took the first iron tablet, she woke up at 7:30 and came downstairs under her own power for breakfast.  It was like a resurrection.  She has been simply amazed by the mental clarity and physical energy (relatively, of course) she’s gained.  We know that this is not going to bring about a complete cure, but it certainly explains a lot.  Instead of feeling as if she is going to sink into a coma and never get well again, the Dafter is singing to herself, so happy at the thought that she can eventually regain the ground she’s lost, and keep on going from there with her recovery.

From my perspective, I am profoundly thankful that the GP (who took the decision to admit her for tests) listened to the Dafter’s conviction that there was something new, very wrong, and worsening all the time.  I can see now that one of the dangers for those diagnosed with a chronic illness is that any health problem will be ascribed to it.  The Dafter was absolutely right, and I am so pleased that she now knows that she was listening to her body correctly.  Of course, we’re also delighted that this problem is something that is easily treatable.

And on we go!  So very, very grateful for small and large mercies.

Advertisements

Responses

  1. Oh Christine what an awful story to read, and how happy I am for you and the Dafter that the iron pills help…My thoughts are with you …
    Big hugs for you, the Dafter and Michael too.
    Erna x

  2. It’s wonderful when there’s such a simple solution, and what a huge relief it must be for the Dafter and for you, to know that taking iron tablets can effect such an improvement. It often amazes me how the body can tell us how to behave by producing symptoms that make us do something differently. So often we ignore this communication and soldier on regardless, but it’s a very important life lesson to learn to listen to your body and the Dafter has learned it well by the sounds of things.

  3. I wasn’t sure what I was going to read here. What a relief for you all, to discover that this new development is easily treatable with iron. All good wishes to the dafter, Christine. She really deserves a break.

  4. Oh what a relief to find something fixable, every time I have blood tests I find myself wishing and hoping for something fixable. I’m so pleased for you all that she’s making up lost ground, I hope and pray that it continues that way. Maybe more regular blood tests (annual or something?) would be an idea and worth discussing with your GP, just to monitor things?

  5. That doctor is a keeper, Christine – his being attuned to the Dafter’s body is not necessarily a given in this current medical milieu. Thank goodness he listened. Give my regards to the Dafter! ❤

  6. Oh oh oh. Trying not to do my usual blaspheming when I hear such. May the lovely Dafter continue to move forward. Cognitive rubbish. I would be sorely tempted to go put some iron tablets down his throat.

  7. What an enormous relief! Sometimes God knows that we are more patient and hopeful than we realise!

  8. So pleased there’s an improvement for her! I know from experience that it is too easy to put everything down to this awful condition and miss getting help for other,treatable conditions. Well done, the Dafter! Love and prayers xxxx

  9. A rollercoaster time emotionally, quite apart from physically. Thinking of you all.

  10. I’m happy that you found a solution to your daughter’s fatigue. How awful it must have been to see her struggling like that. Hoping that the solution for the iron deficiency will be beneficial in other areas too and that she will have more energy all around. I’m sorry she has had such a rough time of it.

  11. It’s very troubling to have to rely on other people to help optimally manage The Dafter’s health, isn’t it? Doctors, like all of us, are imperfect at what they do, and the quality of their advice might reflect their busyness, their emotional state, their incomplete experience and knowledge, etc. I’m sure you and many parents in your kind of situation find the medical-hospital system very frustrating and demoralizing at times (and at other times, life-saving!).

  12. As a chronic health issue person (and I look so normal) I can attest to the need for all of us to stand up for ourselves and press our needs with doctors. I’m sure some of my doctors thought I was really a pain, but I just kept persisting until a practitioner listened. I requested extra tests and when was told that insurance would not cover that test (in the U.S. there are codes to describe issues that are acceptable for insurance coverage and differ by insurance company) I would ask why? Sometimes this was enough to get the Doc off auto pilot. It can be difficult, frustrating, and overwhelming. My husband and I had a joke going whenever whenever I had to return to the doctor who essentially said we can’t do anything but wait and see–“You’re fine,” we’d say. It helped a little.

    Congrats to the Dafter for lidtening and insisting! Nobody can stand up for you quite like you.

  13. I am so happy that you got some sort of diagnosis – a suggestion of a new medicine. After I came home from hospital where I spent Christmas and New Years Eve, and brought in the New Year plus nine days at rehab, I still needed to get completely strong etc again. My new internist did test and said the Vitamin D was way too low, so I took a SUPER strong Vitamin D pil for 12 weeks, one weekly. I have realized that I am feeling stronger and more with it. I have been going to PT 2 times weekly- but my hands are so much stronger and this weekend I went up and down the porch steps without a cane.

    My prayers are always with your family.

    I do want to mention the Vitamin D again- not enough Vitamin, not enough direct sunlight. I need to spend more time outside – well, I was sick, but we also have pollution here and I have asthma. so I do need to figure out how to get more outside time. When my son was feeling so bad and we thought it was depression, one doctor prescribed the vitamin D which did help some. He also had very low levels of it, you tend to if you feel so bad you cannot get up until afternoon. You might ask the doctor about the Vitamin DF and get that checked too.

    LindaC

  14. Oh gosh, that must have been worrying, so glad you got it sorted.

  15. Such good news, happy for you all – the little progresses are also big progresses:)

  16. I am SO happy that this was found out and the tablets are making a difference. What a relief!

  17. Dear everyone,

    Thank you so much for your kind comments,and for all the good thoughts you’ve been sending our way. The Dafter says thank you! She’s continuing to show very slow improvement and we are all really relieved. Now that we’ve identified this problem, she will definitely have regular checks.

    Lorna, you’re so right about the temptation to “soldier on regardless”. I think that the Dafter’s illness has brought her into realms of fine-tuned self-awareness that most young people would never dream of.

    Linda, yes along with organising a house move, it’s been quite a time! I guess life is just like that sometimes, and you have to strap yourself back into the emotional rollercoaster and hang on for the ride.

    Linda DeMars, we have been giving her daily Vit D for over a year, and are waiting for the test results of that check to come back. But I’m sure that actual sunshine is the best thing, and I can’t wait until she’s well enough to get outside more often. Thank you very much for your prayers. I’m so pleased that you’ve had some improvement!

    Jill, thank you for sharing our outrage. CBT does sometimes help people, but it can sometimes be the wrong thing entirely.

    oldblack, from the sounds of it, you know exactly what it’s like to try to help an ill child, not to mention a parent. Perhaps in some ways it’s easier to battle for a loved one than it is for oneself, though?

    Barbara, I am sure many people with chronic illnesses have been through similar scenarios. My personal opinion is that medical professionals can get really frustrated when they can’t find an obvious problem, and/or can’t do anything obvious to help.

    Sarah, it is generally true that the squeakier wheels get more grease, and I’m so glad that the Dafter was insistent about how she was feeling.

    Mali, you are absolutely right about the little victories being big ones!

    Thank you all again for your encouragement and sympathy. I know the Dafter will get well, eventually.

  18. Weighing in here late as I just read this post. I hate that your sweet girl was feeling so ill, Christine. But a big congratulations to her for sounding her conviction, even when the expert didn’t see things the same way! Dafter is an inspiration!

  19. Hello Christine.
    As a medical practitioner (retired) I have some knowledge of this. I would urge your daughter to take advantage of the offer to participate in Cognitive Behavioural Therapy. The reason is this : you say your daughter improved dramatically on the following morning after taking her first iron tablet.

    However when supplementing iron hemoglobin levels usually increase within 2 – 3 weeks of starting iron supplementation. Therapeutic doses should increase hemoglobin levels by 0.7 – 1.0 per week. g/dL

    Therefore it is extremely unlikely that your daughter would be feeling better in such a short time and I would urge you to consider that this increased sense of wellbeing is due to the fact that she believes that the iron will make her better. This in itself would indicate that she would be receptive to and benefit from CBT.

    I’m aware that some patients think CBT is a pointless exercise but can assure you that in many cases patients have improved their symptoms greatly.

    I wish you and your daughter good health for the future.

    • Dear Meg,
      Thanks very much for your detailed comment and good wishes. I agree with you that the mind is extremely powerful. Unfortunately, my daughter experienced a disastrous attempt at CBT last year, but we are urging her not to rule it out in the future.

  20. I was worried too about your daughter, Christine. I hope she will get better and better each day. Thank you for letting us know about her condition. The picture really suits well with the relieve you felt.

  21. How awful that the Doctor at the hospital should take that attitude (I only wish I could say I was surprised), but thank goodness for your GP. It just goes to show that some Doctors need to listen more.

    Hope the Dafter continues to improve little by little. xx

  22. Thanks for sharing your good news. We pray for you and the Dafter regularly. Cbt or other approaches may be fruitful, but it’s hard or even impossible to embrace some new path when you don’t have the strength to get out of bed. Bless her! Concrete problems with concrete solutions — so helpful.

  23. so happy a part of a solution was found and moving forward to get feeling better.. That is a pray answered..
    Hugs

  24. So pleased to hear that the Dafter is feeling better I do hope it continues, I have known several people who have had this condition in their youth and both now lead full and productive lives in fact my niece has two beautiful children and copes with them extremely well. Here is a FB link https://www.facebook.com/photo.php?fbid=10151272856947353&set=t.1068301894&type=1&theater (I hope you can access it) this child was extremely debilitated but now as you can see is quite active.

    Wishing you and the Dafter well and thinking of you

    Susan

  25. Dear Di’, Lottie, Kelly, Kristeen and Susan,
    Thanks very much to all of you for good wishes, understanding, prayers and stories of recovery. All so very helpful! A week after she started the tablets, the iron has helped a great deal.

  26. Hi Christine, I am very pleased to hear this and hope it continues. I had another condition and although I was treated for it, it wasn’t until my doctor spotted I was anaemic and prescribed iron tablets that I started to feel better. My doctor is great and recognises that the body must be treated holistically. Please watch out for tummy trouble, prunes are great preventative measure and I have found Grape Nuts are a great additional source of iron. I hope the GP now regularly tests the dafter’s iron levels as my doctor does for me. My fingers are crossed that she continues to benefit. Kind wishes, Alisa

    • Dear Alisa,
      Thank you so much for your good wishes. I’m so pleased you had a similar helpful discovery, and I hope you are feeling very well now. Yes, she will now be tested regularly. We’re keeping a careful eye on the diet / tummy. I had no idea that Grape Nuts have iron in them! I don’t know if you can get them in Scotland, but I will investigate. Thanks very much for the tip. Take care!

  27. I was glad to read that there was an explanation for this latest development and that she is now on iron…and that there have been no complications from it. I remember being anemic at her age and having to endure the painful iron injections! I’m glad she is feeling better!!

    Blessings,
    Dianne

  28. I can’t imagine how stressful and scared you all must of been 😦
    I am so glad that she is feeling better on the iron.
    I was wondering if you had, had her thyroid and B vitamin levels checked recently as both of these effect the nervous system.
    I suffer from an underactive thyroid and was incredibly ill before diagnosis ( I now take daily doses of thyroxine) so I’m always keen to share that with others just in case they are suffering from similar symptoms to the ones I had.
    I dearly hope your lovely girl will make it back to full health soon. Will pray 🙂
    xx


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: