Hi all! I'm carer & mum to a Fibro sufferer looking for information & friendship. You seem like great people, can I tell you our story?

My daughter has been in severe pain since she was 10 years old. At first it was thought she had a bone infection, and she was put on bed-rest for 3 months. This had a devastating affect on her physical strength and her mental state. She went from being a normal child going out to the park with friends after school, to a reclusive individual who relied on computer chat rooms for 'friendship' and sporadic input from school in the form of homework. She was then diagnosed with Juvenile Idiopathic Arthritis and was told she should be moving around more, but she had been inactive for so long and using a wheelchair, that she had lost muscle mass, balance and co-ordination. Our local hospital didn't have any support tailored to children with JIA though, and after attending a couple of appointments with the adult Rhuematology clinic, it was clear that this wasn't going to be enough to get her mobile again. We asked for a second opinion and got referred to Great Ormond Street. They agreed with the diagnosis, even though they said her's was not a typical case of Arthritis, and we were very happy with her treatment there. Physically she improved, with regular physiotherapy and hydrotherapy, but her mental health didn't, and by the age of 13 she was clearly suffering from depression. She eventually had a total breakdown and was hospitalised in a psychiatric unit for adolescents when she was just 15. None of us have REALLY recovered from that experience, my husband and I lost all our friends because they couldn't cope with her illness. I try to communicate my feelings to my husband, but he can't support me in that way, and he wont agree to CBT counseling.

To bring you up to date, my daughter is now 21, and at age 19 was told that she does not have JIA and possibly never did! Our local hospital Rheumatology doctor said that he didn't think he could be of any further help to her, suggesting that the pain was all in her mind. He actually wrote all this in his clinic letter, which led to her disability benefit renewal being refused at first and then downgraded to the lowest level following a court tribunal. This has impacted on her mental health too, as she is not able to work and feels that she is a constant burden on our finances, particularly as she needs to be driven pretty much everywhere and we struggle to afford running a car now. We asked for a second opinion, and were referred to Addenbrooks who eventually diagnosed Firbromyalgia in September last year. They immediately booked her in to hospital for two weeks for an intensive bought of hydro and physiotherapy. She was also assigned an Occupational therapist who has organised a stair lift at home with various grab rails in the toilet and bathroom. They also provided day and night splints for her wrists and hands, and aids to get in and out of the bath. We had been feeling well supported, however, on only our SECOND routine Rheumatology Clinic appointment two weeks ago, we were devastated to be told that they wanted to discharge her from Rheumatology, Occupational and Physiotherapy. Once again, we feel lost and don't know where to turn, they are saying that the Rheumatology Clinic is really for inflammatory diseases (which of course Fibromyalgia is not). Our own research however, suggests that she would benefit from support from Rheumatology, Physio., Occupational, CBT and maybe even Neurology departments.

Can anyone advise?

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  • Hi there, as I read your post my heart went out to you completely, I started with fibro in my teens, plus other health and mental health issues and what you wrote felt like what my parents could have written. At 17 I was told I had fibrositis, (the name then for fibromyalgia ) and thought that was muscle pain that would go, which of course it didn't. I am now 50 and didn't get a proper diagnosis until nearly 9 years ago now.

    It must be so so hard for you to have gone through so much with your daughter, wanting to help and yet seemingly getting doors slammed on you at nearly every turn. I agree with you completely that she could benefit from Rheumatology, physio etc., but there are also many ways we can find things which help ourselves, and coming here for advice is a very good and big step. There are young people on the board who will be able to empathise, together with many of us who are more than willing to give as much advice and help as we can.

    If you go to fibroaction.org you will find a wealth of information which should be of help to you, but we are always around to listen and help in whatever way we can to help both you and your daughter.

    I am sending lots of positive and healing vibes your way for both you and your daughter :-)

    Foggy x

  • Hi there reflective-peace :)

    I have been sitting thinking about how to reply to you as I feel so bad that as a family you have been through so much.

    I will start by welcoming you to the best site for Fibromyalgia where we all care and share so please don't worry about pouring you heart out as you're very much in good company :) If you visit fibroaction.org you will find a wealth of information regarding all the sub categories on the right of your screen, you can also access it by clicking the butterfly in the top right of your screen. You can search for fibro friendly consultants, read clarified up to date research and learn everything you need to know about Fibromyalgia, medicines plus more.

    Would your daughter sign up to this site she may well benefit from talking to us here and sharing her experiences with us. Depression is part of the flow and we've all had to endure it at some point or other, some of us most of the time.

    I don't want to bombard you with loads of info to take in at once so shall leave it at that and am sending healing, warming fluffies {fluffie cuddles} to you all as a family. Support is a difficult one but it is there in various guises.

    :) xxxsianxxx :)

  • Oh you poor love!! What a devastating catalogue of errors & total mismanagement you have suffered. Although I really don't have anything of great value to add I just wanted to say how terribly sorry I am for you - AND your family. You've all been through so much.

    For what it's worth I believe, as you do, that your daughter would have benefitted from the continuation of the planned treatment of care. It must have been such a wonderful thing for her with the additional gift of a little respite for you. No matter just how much we love someone looking after someone 24/7 who is unable to do much for themselves is a wearing & often thankless task.

    I'm glad you have found this valuable resource now. Please do talk to us here - there are many who will understand your grief, pain & frustrations with "the system".

    I wish you better days ahead & some optimism through the helpful links & advice you'll get through being on here. You can always ask admin to point you in the right direction... You sound a lovely person who is a fantastic mum & wife, perhaps your husband is reluctant to attend counselling due to feelings of inadequacy - he may feel (in accurately of course) that it's "all his fault..." ??? By reassuring him on that level may he reconsider? I do feel CBT is particularly helpful.

    All the very best.

    Warmest Wishes xx

  • Hi there

    I read your post with a very heavy heart.

    You have obviously gone way over and above the call of duty as a mother and have tried just about everything you could, and more for your dear daughter.

    Unfortunately I can't help you with your query as I'm not knowledgeable enough about Fibromyalgia in children.

    I have to say I'm somewhat bewildered as to why Addenbrookes would suddenly discharge your daughter though.

    I just wanted to say my thoughts are with you, and I truly hope that you are able to find some relevant care for your daughter.

    I also hope that you can work things through with your husband.

    We are always here to listen

    Wishing you, your daughter and your family some peace

    Louise xx

  • Welcome

    I cannot offer anything that has not been covered.

    I really wish that I could.

    Peace be with you.

  • Hello I am in agreement with nedd in that can add no more but would like to say welcome....sue

  • Hi and welcome! What a heart rendering story, and my heart goes out to you and your family. I can't add much to what has been said already, but I agree with what Sian said about your daughter perhaps signing up herself on this forum. It would give her the chance to meet other young people in a similar position as herself.

    I really do hope things work out for you and your daughter, and come on here when you feel you need someone to talk to. Love GJ xx

  • Welcome, welcome, welcome. Agreed to all the above. You poor girls. You've been through a lot and it's so demoralising to live such a long time with a misdiagnosis. It might be better of you both signed up. Hubbie would be welcome too. Love the tag, and you've already worked out you can be as anonymous as you like. I was going to mention Fibrofoggiest but she beat me to it as usual. If you can bear to ask, Relate will offer free counselling, and not just on marriage matters, but they do have costs to cover that's why they ask for a donation. x x

    Sian's fluffies are free (don't give them ice cream) as are gentle hugs and good vibes :) :)

    Isn't it funny how the flood gates open sometimes?

  • Evening what Avery sad tale of confusion. Medical primarily and your Lovely family Basingstoke tails for ever looking for answers hope and someone to chat o or to have your hand held. Bless you. We don't have the answers but we can offer somewhere for you to talk I. The knowledge we all suffer from fibrous plus other ailments, our experience is enormous both personal lymphodema fibrous etc so please do come on line and. chat with us I hope your daughters suffering can. Be helped. Best wishes. Xgins

  • Hello :) I too have no more advice to offer, but just wanted to say welcome, I too have only recently joined and only being diagnosed fairly recently too but have had it I believe for years. I hope you can get the help you and your daughter need, here is a good start :) Best of luck x

  • Hi reflective-peace

    I read your post with a very heavy heart for the suffering that you and your family have been put through. Despite all your daughters problems she has one thing going for her that obviously sustains her day and night, and that is YOU. Your love for her is evidently unreserved and her love for you is equally strong. I am so sorry that you have not been able to find much resolution to these issues but you do have a start, in the means of the diagnosis. I think if I were you I would use this to contact Adult Social Services and tell them exactly what you have told us here and see what they can do for you all as you must clearly need some help as it is not sustainable to care for somebody 24 / 7 without external help.

    I was wondering why your husband was so against going to counselling or is it just CBT? Relate counselling isn't cheap. However, most cities and major towns will have a charitable counselling Centre and they usually accept donations based on your ability to pay in return for counselling. If you contact the charities commission they will be able to advise on who is operating in your area. I have pasted their website address below:

    charitycommission.gov.uk/

    There is much that you can hold on to in all of this, in that, you have had disabled fitments installed in your home, so I presume that you are settled and happy there? Also, your daughter did manage to regain some of her disability money so hopefully in the future she will be able to try again to ascertain more of the benefit that she so clearly needs and deserves. I sincerely hope that you can find a greater sense of resolution to the issues that are paining you and your family. We are always here on the forum if you ever need a friend, and the same for your daughter also. Take care.

    All my hopes and dreams for you

    Ken x

  • Hi, I'm sorry, I have nothing to offer but empathy and virtual hugs.

  • Oh dear, nothing else to offer, but welcome and please do pour your heart out here, there,s always a kind word from someone. It may be as has been said that your husband feels a failure, which is a very common feeling, perhaps there is somewhere that offers help for people dealing with a medical problem i.e., your daughter,s condition, rather than emotional? They would cover emotions too, but perhaps you could slip under the gate of medical, which might appeal to a practical mind? Above all do take care of yourself, you sound amazing, I do hope you,re getting enough 'me time' xx

  • Hi reflective-peace,

    I do feel for you and your family.

    My experience was very similar to your daughter's, I was admitted to an adult psychiatric ward (in those days they weren't special adolescent units) when I was 14 with depression following many bouts of physical illness.

    My physical illnesses were finally diagnosed 12 years ago when I was in my 40s.

    It might give your daughter some hope to know that in spite of it all, I was able to get a good education through adult education and I worked for many years as a therapist and a college lecturer. I still do a bit of work at home.

    So please tell your poor daughter not to despair! I know just how dark things can seem when you feel there is no help or respite, but I'm sure there is help out there. I'm under the National Hospital for Neurology and Neurosurgery and I find them really helpful.

    I agree with others who have already written, that therapy or counselling could be very helpful - not just for your daughter but for you, too - you need and deserve as much support as possible.

    I send you my deep sympathy, and I do hope you get some real help soon.

    Mim xx

  • Hi, I've read this over and over and am lost for words at what you have all been through. This site is great and has a lot of very useful information as well as friendly posts from other sufferers. I hope things get better for you, good luck and take care.

    Jenni. X.

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