Fibro or something else?!

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Current symptoms - all worst in the middle of the night.

 

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 and stiffness in hips. General difficulty standing up from sitting. Difficulty raising right knee, can’t raise it higher than when my knee/shin is at 90 degrees. 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. (Still no swollen joints) Walking helps but then pain can worsen after 30-45 minutes. Swimming helps but doing ‘kicking’ feet in water gives shooting pains in foot.

 

Generally movement helps, walking and swimming but there doesn’t appear to be a pattern to it. Walked an hour every evening last week and 3 days of swimming and had several better days in a row, then the weekend brought much worse pain despite no change in activity.

 

Cocodomol only takes the edge off. Just tried paramol which was a little better but could still feel the pain yesterday evening. Tramadol turns the pain into a dull ache which is much more comfortable – but I can still feel it.

 

It’s so unpredictable that I don’t know what routine to adopt as something that will help for a week won’t make any difference the next week!

 

Here’s how it all started…

 

6 months ago – mild lower back pain started. Worsened after some heavy lifting and I had pain along the back of my left leg the following day too. Moved house the following month and lower back pain continued. I start to have some sciatica-type symptoms in the same leg (shooting pains from hip to back of knee). In addition to this, I get burning pains in my right foot, right index finger and left wrist. Pain spread to upper back between shoulder blades.

 

GP Visit 1 (3 months ago) – Diagnosed potential sciatica and as I’d been in pain for 3 months now, referred to physio.

 

Physio Assessment (3 weeks later) – A lot of muscle tightness, mainly on right side by right shoulder blade and also in my lower back. Commence weekly treatment of deep tissue massage and daily strengthening exercises (which I had already been doing for a month or so anyway). Mentioned the wrist and foot pain to physio who didn’t have any answers and recommended returning to GP for blood tests if it didn’t subside.

 

GP Visit 2 (2 months ago) – Report on what physio had said and that except for the ‘sciatica’ which had gone, none of the rest of the pain was any better and physio helped for a few hours but nothing more. Reiterate symptoms of pain in upper back, left wrist, right foot and right index finger. GP wonders about RA (but no swelling in any joints) or vitamin D deficiency and I have my first round of blood tests. I asked about the pain and advised to take cocodomol and ibuprofen together 3x a day to see if it helps. Adding ibuprofen didn’t make any difference either way.

 

GP Visit 3 (1 month ago) – Blood test results: ESR slightly raised and Vitamin D slightly deficient but other blood work, thyroid etc tests normal. Pain the same. GP wonders about a virus, fibro or whether the slight vitamin D deficiency might explain all the symptoms. Prescribed vit D supplements and sent for more blood tests (repeat ESR and ANA). I ring up my surgery and told all tests negative and GP didn’t need to see me again.

 

Final Physio appointment with nice physio (before she moved onto different department) – Recommended trying acupuncture for two sessions and would ask GP for a referral if I was no better as the deep tissue work was only making a slight, temporary difference and no long term effects. Rejoiced I was finally getting somewhere.

 

First Physio appointment with new physio – Blames it all on posture, acknowledges previous recommendation for acupuncture but ignores it, gives me two more exercises and shoves me out the door for 3 weeks after only half an appointment. Great!

GP Visit 4 (Last week) – Frustrated with the physio and still in the same pain, I return on the advice of friends wondering about a slipped disc and hoping for an MRI and discover the blood tests were NOT negative… the ANA (anti nuclear antibody) test was strongly positive. But my ESR was back to normal. GP asked about rash (for lupus) which I don’t have, no dry eyes or mouth, no difficulty swallowing, no other ill effects except fatigue, lack of sleep from the pain and still the same old pain. GP figured a referral to rheumatology would be the next step and so here we are. Likely not a slipped disc as not enough shooting pains in my legs apparently.

 

I just rang the surgery and my GP emailed the rheumo for advice yesterday and is waiting to hear back. Not sure what I’m supposed to do in the meantime?! It’s been months, I’m in the same pain and going out of my mind not knowing what it could be. I have no anxiety or typical ‘fibro fog’ I’ve read about but want to be prepared in case it’s suggested.

 

Anyone had any similar experiences???

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5 Replies

  • Posted

    Hi acascuse-me A rheumatologist is the only person that can diagnose fibromyalgia. what they do is check for pressure points on different parts of your body, their are 18 all togeather, I got the full 18.they like to rule out other things like rhumatoid arthritus, I also had to have a bone scan and blood tests. when I went to see him he said I had fibro and was low on vitamin d. this had been going with me since 2004 being ill different symptoms chest pain breathing probles all different symtoms. I saw no end of specialists and lost count of the tests I had and bloods taken. I was finally diagnosed in march last year. fibro is a very complex thing to have, its based mainly on pain,fibromyalgia has symptoms of ms. you can also have me at the same time as having fibromyalgia. I would do some research on fibro write down all that is going on with you. drs and rheumatologists will rule out other conditions before you get a diagnosis that its fibro. hope this helps take care
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  • Posted

    Rheumatologist needed here to rule in/out Lupus, RA,OA, connective tissue problems etc.  Fibro will only be diagnosed when all other things ruled out. It is not a quick route believe me.  My symptoms started in the 80s and only diagnosed a couple of months ago - not many have to wait this long  though!   Low vit D will give muscle problems but so will other things.  Like Kaz I scored 18/18 on the pressure points but also have OA and positive ANA anti bodies which is why diagnosis is not an easy thing.  I also have highly photosensitive skin which lead to various different consultants having an input.  Keep a diary so that when you do get to see a consultant you have all the symptoms and dates in front of you just in case "the fog" descends and you can't remember a thing which is what sometimes happens when confronted by the medics.  Good luck
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  • Posted

    Hi acascuse - me:

    Well girl, it sounds like it started from U lifting things & of course aggravated it more w/ move. Have U asked ur GP for a EMG test...it could be a pinch nerve running up & down ur side.

    I was diagnosed last October w/ Fibro & undifferentiated connective tissue disorder. This all was triggered by a trauma at work to my neck & right shoulder. And my injury was December 2006, which I thought was All in my head, since that's what drs were saying.

    Anyway, when U have a positive ANA test its always an autoimmune disease, which has to be narrow down. My was done by a MRI to my brain & a lumbar puncture, which definitely narrow my diagnosis along w/ my lupus specialist.

    Anyway, keep pushing ur GP about seeing a Rheumo & check on getting a EMG test. That test puts electrodes on your muscles, which show your area of weakness, etc.

    Wishing U success & keep us gals posted,

    Smiles & Giggles,

    Valerie826

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  • Posted

    Got through to GP today who has prescribed me naproxen for the pain. Will see how we get on with that.

     

    Apparently my GP has consulted the rheumatologist who says to refer me so that’s happening for definite now. Just waiting for the letter (god knows how long!).

    After a week of barely sleeping, needing my last few tramadol from an old operation for the pain, last night suddenly I barely had any pain. Had lower back pain like a b*stard all day, but barely anything overnight.

     

    I thought walking helped, as the day I didn’t walk the pain increased. I then walked but the pain didn’t go down, have a day of not walking, and the pain all but disappears. No doubt it’ll be be back. Just wish I knew what helped and what didn’t!

    Does hormones make the pain worse ladies?? Last month the pain was definitely worse the few days before.

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    • Posted

      so pleased your gp is refering you to see the rheumatologist. Im in pain with walking all the time if I sit for too long I go stiff as a  aboard struggle to move at all I get alot of pain with my back when I walk but I also have disc problems and arthritus in my neck and lower back. mobility is a real problem with me now and Im now having to use a wheel chair when I go out. Ive gone through the menopause so dont know if the hormones make the pain worse or not. I sure you will get an answear off one or more of the ladies on this sight take care gentle hugs
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