Fibromyalgia diagnosis ruled out almo... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Fibromyalgia diagnosis ruled out almost immediately

regina79 profile image
12 Replies

Hi there,

I went to see a Rheumatologist a couple of weeks ago (with private med. insurance) and she sent me for two lots of blood tests and many scans. She suspected Rheumatoid Arthritis... She said that in order to be tested for Fibromyalgia your widespread pains should be 'explained' by other causes. I finally did test positive for RA and autoimmune diseases in general. And my pains are inflammation pains due to hip bursitis, and others. I wonder if one can have both RA and Fibromyalgia?! I do tick a lot of the symptoms for Fibromyalgia tbh.. x

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regina79
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12 Replies
desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

yes you can have both

regina79 profile image
regina79 in reply todesquinn

Really?! Hmmm. I wonder why my Rheumatologist doesn't think so. I also read online that Fibrom. is related to 'unexplained widespread pain'. But my pain is now explained.. ?! I'm very confused :( x

Cape_Cod_Sharon profile image
Cape_Cod_Sharon

I live in the US, my diagnosis is Primary Fibro with rheumatoid arthritis. They often go hand in hand. Maybe you need a new doctor who treats many patients with fibromyalgia [myalgia means pain, duh]

regina79 profile image
regina79 in reply toCape_Cod_Sharon

Yes but her argument is that Fibromyalgia is pain that can't be explained/proved that is due to other causes x

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toregina79

up until the recent ACR 2016 criteria fibro was not normally diagnosed when there may have been another possible reason for the pain. The 2016 criteria is still being accepted so there will be doctors that will not diagnose where another condition may explain the pain.

Unfortunately there are still doctors that do not believe any of the criteria or fibro exists :(

regina79 profile image
regina79 in reply todesquinn

Oh dear. That's so confusing and unfair for people who need a correct diagnosis though :(

This specialist is a Rheumatologist but no idea what experience she has with Fibromyalgia patients. Thanks for clarifying x

rosewine profile image
rosewine

I personally know two people who have RA and also secondary Fibromyalgia.x

johnsmith profile image
johnsmith

The answer to question is yes. If you are able see an Alexander Teacher. You have a lot of learning to do in regard to learning how to move more effectively and efficiently. The effective and efficient moving of muscles will reduce your overall stress which will result in improvement in quality of life.

Fibromyalgia type symptoms could be issues with fascia and over contracted muscles. Worth seeing sports therapist for advice. A sports therapist should be able to lengthen over contracted muscles and get the struck layers in the fascia sliding again if this particular problem is present. This is for you to investigate.

sueshepy profile image
sueshepy

Hi there, Fibrom is linked to a lot of diseases such as diabetes. You can also have RA and osteoarthritis. Have you been on this site ukfibromyalgia.com

It is very informative.

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., morning if you feel that you need a diagnosis still go back and speak to your doctor as desquinn has said yes you can have both, sometimes it takes awhile to pursue and get all of your boxes ticked, it certaintly did for me sleep apnea 1st then fibro, then cfs but finally got there in the end. Doctor was the one who actually gave me diagnosis on fibro and cfs. Good luck and take care x posted a link above if you would like to lock your posts.

Shazz01 profile image
Shazz01

Your rheumatologist should check the 18 points in your body it’s common for fibro sufferers to have most of these tender painful spots on the body, may not have all 18 but 90% of them, along with other symptoms, and ruling out other illnesses first it takes time it’s a case of elimination, hope you get a good rheumy as my first one told me nothing he can do now and the tablets are crap anyway, this was his words to me, very disheartening, got referred to a different one and he’s more thorough and did more tests and checked the 18 point sensitive spots, although none of this helps the problem it’s just a confirmation, and can get referred to more helpful specialist and tests, so going forward always gives you hope that someone along the line will find the right meds that help you or alternative options. Hope this helps. xx

Judithdalston profile image
Judithdalston

Having had a fibro diagnosis 3 years ago, and consequently reading this forum regularly, I get the distinct impression even in the U.K. that diagnosis and treatment varies postcode to postcode, trust to trust. After years of pain and blood tests, scans, physio and even acupuncture on the NHS nothing specific was found, nor improved. Then sent to a rheumatologist ( I had seen one 10 years previously) who took a long case history, and with search for paired pain points ( nearly shot off the bed with pain before he got much past my ankles), he diagnosed fibro. So for me the diagnosis was one of exclusion ( anything that could be seen in bloods or scans), plus experienced hands that knew exactly where pressure points were. Plus, which is sadly missing from much nhs experience, he listened and asked pertinent questions about my problems. Letter to Gp took 4 months to arrive back at surgery ( due to problems in ‘typing’), so meanwhile contacted consultants secretary who found his notes and said recommended amitriptyline. But that was largely it; an invitation to an ‘information’ evening arrived for about 8 months from diagnosis, which was not a positive experience as patients with 20 plus years fibro were included( first time they had been offered it), including some in wheelchairs! Even I knew much more about fibro. than the young staff, who admitted little knowledge. Tai Chi was suggested but not where (only one I could find started at 10 am...too early for my fibro body). So from my experience a fibro diagnosis meant little...where I live you won’t be offered pain clinics, yearly checks etc, but perhaps with RA it would be something they could ‘check’ or monitor and you get a better experience of being cared for rather than abandoned.

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