getting help

All your fibromyalgia experiences, questions and answers.

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getting help

Postby reb1981 » Sun Jan 04, 2015 5:10 pm

Iwas diagnosed on 19th Dec privately and that is it, feel like I have no support. Should I go to the doctors and ask to be seen by rheumatology to try and help with the pain and give me some advice or am I on my own
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Re: getting help

Postby Zia2014 » Sun Jan 04, 2015 5:47 pm

Hi Reb,

Sorry to hear you've not been offered any help - I think that's quite common unfortunately and I had to badger people to get referrals.

I'm assuming you got referred by your GP, is that right? I had a 'working diagnosis' by my GP, a confirmation by my Rheumo and that was the key to getting referrals, my GP wouldn't do that before (although that varies by area). I would ask your GP if they will refer you to your local Fibro/Pain clinic, again names and help vary across areas. Also possibly a physio, hydrotherapy and/or clinical psychologist (for CBT for the pain). What they are called and how you access them all depends on the provision at your local nhs/hospital. If you are willing to say what county you're in there might be local people who know on this forum.

My (unrelated) physio before I was diagnosed told me the one most important thing I needed to do was chase everything, badger people and generally make sure they are doing their best for you. Otherwise you can get left on your own and I think particularly with something like Fibro, there is very little information out there on what you can get.
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Re: getting help

Postby reb1981 » Sun Jan 04, 2015 6:50 pm

I'm in South Yorkshire / Derbyshire area. I went to my doctors then demanded a referral it was going to take 36 weeks so went private and I have had no help since, I only take paracetamol or similar and they don't help I'm on 10 mg amitripline o have bipolar and antidpressants send me manic so have to be careful with those
I have trouble with the easiest of tasks and I have an assessment for pip on Friday for both conditions but I have no info to back me up regarding the fibro
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Re: getting help

Postby Paisleyjane » Sun Jan 04, 2015 7:51 pm

Hi, sorry to hear you are struggling. I live in North Linc's and have had good support. Here you can self refer to OT. It was her reports that helped get my benefit. All the safe living aids, perching stool, shower stool etc.
Long wait for pain clinic, but your consultant should still write to GP with treatment recommendations. Ask GP about meds he should help, lots of people go to private consultant then NHS.
Hope all goes well. :goodluck2:
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