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?