Fibro or something else?!

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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