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newly diagnosed (sort of!)

PostPosted: Thu Sep 04, 2014 4:07 pm
by Mondie
Hi Everyone

I have suffered with what I believe is FM for years and years, but whilst my GP says I exhibit many FM symptoms she is reluctant to send me to a specialist as she thinks it will be counterproductive.

You see I also suffer with health anxiety and hospital visits and tests make me feel really bad.

Anyway I have lots of pain, restless legs, headaches, fog, exhaustion, swollen lymph nodes etc etc.

So I am clinging to a Semi FM diagnosis and stumbled across this forum when looking for support.

Hope to see some of you around here.

M x

Re: newly diagnosed (sort of!)

PostPosted: Thu Sep 04, 2014 4:31 pm
by Helhit
Hi and welcome.

I was diagnosed by my doctor and haven't been to any specialist; but she is helping me manage. She also went through the benefits of pacing and graded exercise.

I think if I got to a point where nothing she gives me is helping, then I'd ask for a referral too. But I get quite het up about appts so I much prefer it as it is at mo

Re: newly diagnosed (sort of!)

PostPosted: Thu Sep 04, 2014 5:38 pm
by rich44
Hi welcome

I don't understand why your Dr thinks seeing a specialist will be counter productive, that's why we have specialists.

Re: newly diagnosed (sort of!)

PostPosted: Thu Sep 04, 2014 7:21 pm
by Gracious
Mondie, not being referred to a specialist does not mean a lesser/misdiagnosis as such. I had FMS for 24 years and was told it was stress and depression for 23 years, till I spoke to a phychiatrist last year and she said you have Fibro.

She wrote to my doctors and then they finally listened and said you have fibro :shock: and then I was sent to a Rheumatologist, who looked at the medical history info from my doctor, confirmed this with me and pressed on the 18 trigger points, no clothes removed just my shoes and it was confirmed I had Fibro and that all the treatment that I was already having would be exactly what she would have recommended anyway. I was in and out in 5 mins with a leaflet explaining the condition, and that was it.

My main care provider is my GP for my condition, not the Pain clinic or Rheumatology. I go to the Pain clinic for Physiotherapy and Pain Psychology session. I get referred to specialists if my symptons can not be brought under control and are seriously impacting or seem unsual and persistant. An example would be my persistent migraines for 20 years, in that time been to neurology several times for more specific specialised treatment. Now being considered for Botox therapy as nothing has worked or agreed with me.

If there was to be a sudden change to your condition you may find that your GP may refer you to Rhematology. My advice would be to just keep asking to see one, if you need them to confirm diagnosis, and if he wouldn't refer and you want to see one go to another doctor and get them to refer you.

Of all the tests I have had done in my lifetime by specialist and at hospitals, this one was by far the least evasive. I understand your anxiety and that eveything in your body and mind will be telling you, you cant go into the hospital, but bare in mind this is about you looking are you and sometimes we have to face our anxieties and accept they will be there and still proceed for the benefit of our own well being.

It may be a good idea to get your GP to refer you for some talking therapy to help you develop some coping skills for the anxieties you are have serious issues with.

Hope this is of some help
With loving kindness

Re: newly diagnosed (sort of!)

PostPosted: Thu Sep 04, 2014 7:26 pm
by rich44
If your problems get severe enough to be claiming pip having seen/on the books with specialists may well help that too.

It's worth the referral for peace of mind if nothing else tbh.

Re: newly diagnosed (sort of!)

PostPosted: Fri Sep 05, 2014 8:49 am
by Mondie
Thank you so much for the replies, they are very much appreciated. I think my GP think that by sending me to specialist she will be fuelling my anxieties, she said that they wouldn't treat me any differently to what she can so whats the point?

I can kind of understand her thinking, but I also worry that the pains I have are caused by something much more life threatening than fibro...I can't win!