Fibro

Hi I have a 14 year old daughter who was diagnosied with fibro and cronic fatigue she also suffers with hyper mobility acid reflux IBS and anxity and also a fear of vomiting she is haveing cbt and just started back at physio she can not attend school because of the pain and anxity so they have put her in a small group for a few hours a week

But even that she finds to hard she says it's like her whole world has come crashing down on her she gets upset says we don't understand as with have to keep going on all the time that she must go to the group had a meeting with cbt lady someone from camden to do with schools family therapist and doctor just keep going on about how they want her do do this with no medication don't know what to do

Last edited by

23 Replies

oldestnewest
  • I read your post with such sadness, so young to be going through all this. Is there any chance of home tutoring, it may be something to look into. I cant be of much help but I will say that physio and CBT are the best treatments, it is not usually recommended to give meds for anxiety to young adults, pain relief should be offered though. I do hope you find a solution to this we are a friendly bunch here. I must add I am not medically trained and speak only from experience. All best wishes. Lou xx

  • Thank you so much for your kind reply they won't let her have a home tutor as they reckon she needs to get out and mix with other people also want give her pain relif only parctomol

  • I fully understand the need to mix with her peers but I would argue the case that her anxiety should be addressed properly before she can be expected to interact in this way. Being ill with all these issues is taxing enough for adults. I hope someone here can come up with more help. Lou xx

  • Thank you so much for takeing the time to reply I've asked so many times but they just keep saying this is the best way it's so stressful as a parent to watch your once happy child who used to do kick boxing and irish dancing doing nothing because she's so sad

  • Kick boxing and Irish dancing to sad, I have to ask, was this a slow downward spiral? Does she have a boyfriend ? Does she talk to you? Could she be going thru something tramatic that happened to her that she has not told anybody about? Does she have friends / best friend ? Teen years are tough on everybody .

  • No she doesn't have a boyfriend her best friend lives quiet far from us so she only sees her now and again not many friends always found friends came and went don't no why as she's such a kind giving girl speak to anyone

  • Also she tells me everything it started when she was ill and got sick she freak out said she felt she couldn't breath that started a phobia of vomiting had a bit of cbt but it got worse

  • I'm not a medical professional but the following are my opinions on the matter:

    I can't believe that they haven't tried any meds like gabapentin which may help with her pain level. But if it doesn't, she sure deserves more than paractamol I should think. It is just tylenol (mainly used for arthritis and headaches) and it doesn't work for some people - including myself. I wouldn't be surprised if an antidepressant would help her. Some of those help decrease the level of pain (I'm on elevil which my doctor says may do this). She probably could use something for anxiety too. Gabapentin might do that, but didn't help me any.

    My Lord, no home tutors considered appropriate? That is hard to understand. Until the symptoms of her FM are under control, how can they think she'll be able to cope with going out amongst other students?

    Sometimes I just don't understand what doctors and therapists are thinking! Maybe if they had FM they'd be more empathetic. But that's an old discussion you'll find here on the forum. When it comes to GPs who haven't an inkling of what this disease does to people - and it's got to be worse in the young who should be out learning and having friends and fun - I have no respect or admiration. Who do they think they are?

    I'm sorry for the rant, but I just get blood in my eyes over this kind of treatment. Or should I say: NON-treatment . . . Can you get second opinions; different GPs? Those who are not close minded about her suffering?

  • Thank you so much for your understanding cbt therapist Nero disability consultant gp all say the same don't know who else I can talk to keep saying the same thing and all the while she's getting worse also should have mentioned she suffers with terrible periods hasn't stop bleeding really heavily in monthes even on the pill finally got ultra scan this week

  • Have they checked for anemia?? Thyroid ?

  • She's slightly anemia she's having thyroid blood test this week she's very low in vitiem D

  • Being anemic and low on Vit D will cause major fatigue which if you are normally very active , will have major impact on sadness .

  • Hi there

    I'm so sorry to read about your daughter. It must be heart breaking for you.

    Is there any way you can stand firm and say that your daughter needs some medication if she is to return to school. I am also wondering whether you can do some bargaining with her school and perhaps agree to her doing half days or three lessons per day? I am guessing you have already thought of this.

    What sort of relationship do you have with her Head Teacher? Perhaps if you could build up a rapport with him/her you could say that if the school would let her go part time they could send some work home for her to take her time with over the weekend.

    I am struggling to come up with ideas as having had Fibro and Chronic Fatigue for over 30 years I can fully understand what your daughter is going through and I have every sympathy for her and for you seeing her change so much.

    I am so sorry that I haven't been able to come up with anything more constructive.

    Hugs for your daughter and for you

    Lu xx

  • Thank you so much for the comment she doesn't attend a school anymore just a little group 2 days 4 hours 1 day 2 hours but she seems to have lost the will she just seems to focused on the pain plus she has terrible periods can't stop bleeding even on the pill due for ultra scan this week

  • Until she can get better help, you might try homeopathics. It is energy medicine, so either helps or does nothing. Arnica is the most frequently used for pain, and there is homeopathic Valerian, which is the plant that Valium is made from. If you want more info, there's a page with articles at hpathy.com.

  • Thank you so much I will look these products up

  • They are usually available in health food stores or online. I hope they help!

  • I have read your post with so much pain and sorrow for what your daughter is suffering and how it must hurt you as her mum. I think most of what I would have suggested as already been said. However, there are Fibro groups out there whereby she may meet other people her own age wit Fibro? It may be worth a try? I have pasted you a link below to our FMA UK listings on groups:

    fmauk.org/contactsmenu/supp...

    I want to genuinely and sincerely wish your daughter, and yourself all the best of luck

    All my hopes and dreams for you

    Ken

  • my dad have something similor. dose she forget lot. he dose

  • You need to take this further, all the way to the top. It's like they have just left you all to get on with it. Go and speak to someone at the CAB office and they will give you guidence and support into what to do next. I know you don't want to complain, but this is a huge concern and your dear daughter has her whole life ahead of her and you and your family just want the BEST CARE and quality of life she can possibly have. x

  • I understand your situation need specialist advice, it may be helpful for you to contact Association for Young People with ME (and Tymes Trust). Where there are experts who can advise and give support on the complex difficulties you are facing.

    Hope this is of some help.

    Alice

  • There is already so much really good info here given by our wonderfully knowledgeable and kind community.

    I agree that she needs pain relief in order to live as 'normal' a life as possible and the sooner they begin trying to find a level which works for your daughter, the better.

    I went to school almost every school day though never integrated. If one cannot join in everything which others do how are they expected to have a school 'career'. The small groups sound better to me.

    Just my two pennies worth!

  • Ahh poor girl so young in 46 and find it hard to handle hugs going out to you both xx

You may also like...