New and confused

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New and confused

Postby Delilah » Mon May 18, 2015 10:34 pm

So glad to find this forum as I am in such a lot of pain and not getting answers from my doctor. Really hope you don't mind if I describe my symptoms. I know you aren't doctors, but would love to hear if they sound familiar to you as I am still learning what Fibro is all about.

I have had three episodes of severely aching muscles and bones over the last 2 years which I can only describe as feeling like I have the flu (without any of the respiratory symptoms). The last one was about 10 months ago - the doctor carried out a range of blood tests, inc inflammation markers and rheumatology but all came back normal. The symptoms went away after a few weeks so no further tests were done. A few weeks ago, they returned with a vengeance. Severe, all-over muscular pain (feeling like flu) - esp bad in the legs. The pain is there all day, but is fairly changeable and gets worse during the course of the day (it's at its best in the morning). It is helped a little by going to be with a hot water bottle or a warm bath. I also have fatigue, which again worsens during the day. I feel like I am dragging around a 10 tonne weight or wading through treacle. Oddly the pain is often worse when at rest and better when moving - eg walking. Other pain includes gnawing and stabbing pains in my fingers and wrists and at the top of my feet; knee pain and what feels like muscle knots in my thighs. All these symptoms vary during the course of the day. I do also suffer with headaches and migraines with stiff neck, but these have eased recently. In addition to the aching, I also have a lot of soreness all over my body - eg all down the outsides and insides of my legs hurt when pressed - it is AGONY when my child or puppy jumps on me. Elbows and outsides of arms are also intermittently sore. Buttocks and hips really sore too when pressed - I had a massage recently and nearly hit the ceiling when the masseur went to work on that area. I saw the doctor again when the symptoms returned a few weeks ago and more blood tests were carried out (FBC, Thyroid, Rheumatoid, CK, Inflammation markers) - all came back normal except Rheumatoid Factor which was borderline - 11 - which the doc said he considered normal. He said there is nothing serious showing up so it could be something "Fibromyalgia-y" - whatever that means! He doesn't want to see me for a follow up and suggested I go away and take it easy - try to rest etc. It has been a particularly stressful time recently, but can FM really be brought on by stress / tiredness?

My sleep is generally pretty good - which doesn't tie in with FM - and the pain isn't bad in the morning which doesn't seem to fit. I don't have depression (though do tend to be quite an anxious person). I also don't have any problems concentrating. The other thing which I am not sure fits is that the symptoms do seem to have days when they are not really noticeable, then wham, a really bad day and they all come back and flatten me. Is this normal?

Sorry for the very long post - just trying to work out what is going on. No idea medically where I go from here either. Do I need more tests? If this is a flare up of FM, how long does a flare typically last?

Thank you in advance for any help!
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Re: New and confused

Postby Happy Girl » Tue May 19, 2015 8:50 am

Hello Delilah,
I would ask to be referred to a rheumatologist. Fibro can be a difficult thing to diagnose and, yes, it is confusing even when you have been diagnosed as you never know how you're going to feel. Once I'd had the diagnosis and discovered what it meant I made up my mind it wasn't going to ruin my life completely. I can no longer work but I keep going with what I can manage. I reckon the important thing is to pace your life and find ways to make life easier. I now have a mobility scooter for shopping as it was taking so long to get round the shipping and I'd get home completely exhausted. I now enjoy doing again. I also use it for days out and when I want to walk hubby rides it for me. It's difficult but try to keep positive and cheerful. Take care.
Determined to be happy
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