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Is it fibro or auto-immune or something else?!

aca-scusemeaaca-scuseme Posts: 1
edited 06/10/2015 - 4:31 AM in Fibromyalgia
Current symptoms:
- all worst in the middle of the night and first thing in the morning for an hour or so, but can continue longer/start earlier
- present for 3 to 6 months

*Pain between shoulder blades, back of neck and shoulders and into upper arms. Putting arms in sleeves or doing bra up behind me gives burning/shooting pains in my upper arms. Not particularly sensitive to touch, all about movement especially in the night, turning over in bed is agony.

*Pain in centre of lower back after sitting for 30 mins or so. Shooting pain in centre lower back when standing up

*General difficulty standing up from sitting. Difficulty raising right knee, can’t raise it higher than when my thigh is at 90 degrees with my hip, sometimes less. Real difficulty crouching down and getting into/out of car due to same right hip problem.

*Shooting pains in left wrist when opening crisp packets, unscrewing bottle tops. Weakness in same wrist, can’t open door handles or hold heavy saucepans. Starting to drop things a little more. Not swollen and not sensitive to touch although does feel warm often.

*Shooting pains in right foot, across side of foot and sometimes the top into big toe. Pain putting foot flat on floor in the morning even without any weight on it. Real pain in shins and ankles first thing in the morning going down the stairs and walking around for about an hour or so. Walking helps but then pain can worsen after 30-45 minutes. Swimming helps but doing ‘kicking’ feet in water gives shooting pains in foot.

Blood Tests:
-ESR was slightly raised, then back to normal
-Regular blood work, thyroid function etc all normal
-RA factor negative
-Vitamin D slightly deficient, been on supplements for a month which have made no difference
-ANA 'strongly positive' (need to find out more specific details) and GP has emailed rheumatology for advice...

GP and physio discussions:
-RA mentioned (but no swelling in joints, RA blood tests negative: RULED OUT)
-fibro mentioned (but I have no anxiety or concentration problems)
-lupus mentioned (but I have no rash or any of the other symptoms)
-deep tissue work has some short term benefit (matter of hours) before symptoms return to 'normal' ie pain continues!
-latest physio tried to simply blame posture, which I refuse to accept that it is.

-paracetomol all throughout the day has little effect but slightly takes the edge off.
-cocodomol in evenings helps a little but I can still feel the pain and doesn't allow me to get back to sleep
-tramadol turns all the burning pains into dull aches which is much more comfortable... but I still can't sleep!

Does it sound like fibro or auto-immune or something else?
What should I try to help ease the pain? Swimming... exercises... painkillers?
What should I say to GP next?
Oh right, this is like a thing now.


  • itsautonomicitsautonomic LouisianaPosts: 1,806
    Fibro should be the absolute last diagnosis looked at , it is a diagnosis of exclusion which means a bunch of stuff should be ruled out first. Only a fibro specialist should give or verify this diagnosis, to many people I have come across accepted fibro diagnosis for years only to find out later it was not that and their treatment was delayed. It can be a lazy or undeducated about other conditions diagnosis when a doctor cannot find problem. Not that it is not real disorder, but I would never accept just a GP diagnosis of fibro. So many neurological, auto immune, endocrine, and other types of disorders mimic fibro.
    I would just keep looking and if fibro comes up from GP ask if everything it could be has been eliminated. If he says yes run. Your current symptoms have gone for 3 -6 months, some neuro or auto immune disorders take 3 -7 years avg. to diagnose.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SavageSavage United StatesPosts: 5,427

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  • RA factor negative doesn't rule out rheumatoid arthritis - it just means that it isn't confirmed. Only 80% of RA cases have a positive RA factor. No matter how good your GP is, he/she won't have the specialist knowledge to diagnose and treat the problem. Could be any number of auto-immune diseases. You need to be seen by a good rheumatologist.
  • you might consider polymyalgia rheumatica which affects the upper arms, shoulders, and neck and stiffness....I was diagnosed with this by my rheumatologist...I couldn't raise my arms above my shoulders or turn over in bed because of stiffness....treatment included steroids and methotrexate....meet with a rheumatologist....good luck..
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