Old 01-09-2017, 02:58 PM #1
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Default So frustrating!

I've had problems for years with joint pains mainly but loads of other symptoms that have brought me to a possible diagnosis of Fibro. I'm getting so frustrated with living in limbo land, I just wish I knew what was wrong with me. I've had so many tests and still no diagnosis. I saw physio today, I was referred because of sciatic type back pain which started because my knees were so bad I couldn't bend them & did my back in. I had my knees x-rayed today, no sign of osteoarthritis. I had a positive ANA test but a negative ENA so rheumatologist doesn't think it's rheumatoid, I have hypermobility with the possibility of fibro on top of that. I know I should be happy the x-rays came back clear but it's just left me even more frustrated that I don't know what's wrong with me. Is all this pain and all of the other symptoms just in my head?!
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Old 01-09-2017, 03:41 PM #2
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Default Re: So frustrating!

Welcome.has any dr told you you have fibro.have you asked ?. Many of us here waited for years.years of tests and dr ticking off one disease after another
. but sometimes it takes a very long time to be dx .what other symptoms do u have
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Old 01-09-2017, 04:30 PM #3
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Default Re: So frustrating!

I saw a rheumatologist in October who ruled out rheumatoid, acknowledged I have hypermobility and said either I was suffering from hypermobility syndrome, fibro or both. I could tick off so many of the fibro symptoms, I seem to have most. I tested positive on most of the tender points, problems regulating body temperature, joint pain, sleeping poorly or waking up after a reasonable sleep but still feeling knackered, poor concentration and memory, IBS, chronic headaches and migraines... I've had all of these symptoms for years and been for physio, hydrotherapy, seen one dr after another and it's only the rheumatologist who mentioned fibromyalgia, my symptoms date back at least 7 years & right now I just feel like a hypochondriac and all I do is moan!
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Old 01-10-2017, 04:04 AM #4
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Default Re: So frustrating!

I am so sorry you have to go through this endless cycle of tests with no firm diagnosis. I went through it for years myself to get one and then to get it confirmed and find treatment as no one would treat me due to my age and no one believed me. I think you should go back to the rheumatologist who mentioned it to see if he could give you the diagnosis since you tested positive for the tender points and you have most of the symptoms. Having.a majority of the 18 tender points is typically how a diagnosis of fibromyalgia is given. Even though now they are saying you have fibromyalgia if you have had pain for three months or more with no underlying medical cause.
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Old 01-10-2017, 10:35 AM #5
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Default Re: So frustrating!

Thanks for your reply Brandi. It's a bit of a nightmare here in Scotland, it's great that we have a health service but everything seems to take forever. I'm not due to see my rheumatologist again until April & am pushing for a sooner appointment but given that his clinics are fully booked until the end of the year, I don't like my chances. I guess I just need to be a bit more patient!
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Old 01-11-2017, 07:02 AM #6
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Default Re: So frustrating!

Do they have the possibility to put you on a cancellation list? That's something they sometimes do over here in the U.S. when they are full.
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Old 01-11-2017, 03:31 PM #7
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Default Re: So frustrating!

Yep, have already done that, have asked occupational health at work to try & expedite the appointment plus the letter from my GP, fingers crossed I get seen soon
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Old 02-08-2017, 07:08 AM #8
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Default Re: So frustrating!

I have fibromyalgia, and it started almost 20 yrs ago. I suffer with pain everyday. I have tried everything to get rid of it and nothing has worked. I hope you do not have fibro.
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Old 02-08-2017, 07:13 AM #9
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Default Re: So frustrating!

Hi, I have had fibromyalgia for over 15 yrs. I was under alot of stress when I first had symptoms. I was in so much pain I couldnt even drive my car. Unfortunately I went on pain medication and it did help for a long time. Now I just deal with pain everyday, some days it is worse than others.
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Old 02-08-2017, 09:34 AM #10
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Default Re: So frustrating!

No my friend! THEY ARE NOT IN YOUR HEAD! I AM NURSEING A BAD KNEE TOO. THE PAIN IS OBVIOUS, WHEN MY KNEE LOOKS LIKE A FOOTBALL. FIBRO CAN HIT JUST ABOUT ANYWHERE AT ANY TIME. YOUR NOT ALONE, AND.......YOUR NOT CRAZY.
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Old 02-08-2017, 04:11 PM #11
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Default Re: So frustrating!

Thanks. I have an appointment with my rheumatologist on Monday so hopefully I'll get some answers then.
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