"Fibromyalgia and the lack of doctors knowledge and support received by gp,s/hospitals in Derbyshire"
Posted by depressed59 (as ),
I have had fibromyalgia for the past 16 years and had to finish work last year because of it.
I had been seeing a doctor at my doctors surgery and I thought she had a good understanding of the illness and that she was there for me. Since finishing work I applied for Disability Living Allowance and the report she sent in did not support me at all, it was as if all that I had been telling her about my problems had been forgotten.
Needless to say I was turned down for DLA. I went to appeal and she was asked for another report and this time what she wrote down made me feel like she was saying that it was all in my mind, and that she didn't think I was telling the truth about what was wrong with me, which meant I did not get DLA.
I was so upset at how I had been treated and also by the fact that every time I went to the doctors for help with this illness all they could say was "I don't know what else to say or what to try". I have tried other doctors at this surgery and they all seem to have no knowledge of the treatments available or in fact how this illness affects each and every person with it in different ways. They don't seem to care and I'm left trying to cope with constant pain over my entire body and stiffness in my neck, shoulders, lower back , hips and ankles.
I have morning stiffness, ibs, headaches, numbness and tingling in hands and feet, costochondritis, anxiety, depression, sleep disturbances, visual problems and so on and so forth, the list of my problems is endless. The lack of help and support is now causing me to become really depressed, I'm irritable, moody, and stressed all of the time.
I was sent to the Pain Management clinic at the Royal Derby Hospital and received a lidocaine infusion which didn't work and that was it, apart from completing the pain management course and that's it now, I have a 6 month open appointment. I was referred to the rheumatologist after I requested it from one of the doctors at my surgery, again I left this appointment feeling very down, as I was told that I had tried everything that they would suggest, they took a load of blood for tests and they told me that they would write to my doctor suggesting a few different tablets for me to try and would suggest a referral to the ME/CFS clinic at Ripley Hospital, this was at the end of May.
I went to my doctors last week to see a new doctor and I came away even more depressed as she said that she felt her role was to be there to listen and empathise with me, she hadn't received the letter from the hospital.
I asked about whether there were any other medications that I could try and she said she didn't know as she wasn't a specialist. I'm so fed up with having to fight for some support and help with this illness and I am now looking for a new doctor in Ripley, even Derbyshire, that specializes in this illness and knows how to help and work with its sufferers.
I need help and I feel like there is nobody out there that can help me. This illness has robbed me of my life and I feel that the doctors I have seen do not believe me, they have made me feel like I am a hypochondriac because I have spent hours on the internet finding out about my illness, and when you tell them about what is wrong with you they don't like it, they have made me feel like it is all in my mind but believe me it is real, and I hurt now both physically and mentally and I feel so alone.
If anyone knows of a good doctor in Ripley or Derbyshire who really understands this illness please let me know as I am desperate to get some help.