Just been told I might have Fibromyalgia.

Posted , 8 users are following.

Hi,

Over the last 8 weeks I have been suffering from pain and burning sensation  across my shoulders, down both arms, from my neck down past my shoulder blades and all across the top of my back.

In the last 4 weeks symtoms have increased and have spread to my lower back and down my right leg as well.  My doctor has told me the leg problem is siatica and she thinks the rest of my back and arm problems is fibromyaglia.  I have had an x-ray and standard blood tests done which have all been clear apart from slightly high colesterol level.

As well as all of these symtoms I have had problems sleeping, get confused easily, mood swings, pins and needles and having problems saying whats in my head.

Doctor has put me on 40mg of amitriptyline, 500mg of naproxen and 15/500mg of kapake.  I don't really feel any benefit from the amitirptyline apart from making it very hard to get up in the morning. The rest sort of helps with the pain but find it very difficult to normal every day tasks which is extremely frustrating.

I have two young kids and a 3rd on the way so this has come at "great" time.  Doctor says she is thinks it is fibromyaglia but it might not be which is a real help. 

 

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10 Replies

  • Posted

    Hi philb, Sorry to hear you have Fibro,

    it must be so hard for you looking after two little ones and another on the way,

    40mg of amitripyline to start with sounds quite high? And can make you feel horrible the next day,

    I've taken 10mg in the past but found I needed to take them around 7pm sometimes my body relaxed enough to ease the pain at night but not always, I then struggled the next day in work and decided it wasn't for me,

    I've had this longer that 15 years and have no answers only try to rest as much as you can, ( not easy with a young family ) stress Is a big factor and will make things feel worse,

    I find magnisium spray oil effective but do seek advice from your GP as your pregnant if you want to try it, I don't like talking to much so rubbing magnisium into my joints give a good relief

    Hope you find something that works for you soon

    Gentle hugs to you, your not alone.

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  • Posted

    Doctors can be very reluctant to diagnose fibromyalgia. This is because it is an elimination diagnosis i.e "We can find nothing in the tests so it must be fibromyalgia". The symptoms do sound familiar. That is a fairly low dose of amitriptyline. As for the not getting up in the morning, what time are you taking it? Try taking it earlier. I'd investigate magnesium supplements, Boots Calcium, Magnesium and Vit D (one tab) are good but you might need more than the RDA (I take three times RDA). Also investigate tumeric and root ginger. If you discontinue amitriptyline then valerian root tablets are good for assisting sleep. Epsom Salts baths are soothing. You can buy Epsom Salts (magnesium sulphate) in bulk from Ebay.
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  • Posted

    I start with 20mg and doctor has increased it because I have about it having little effect.  Thanks for the tips, luckily im not the pregnant one so it shouldnt be a problem.

    Has been a difficult time just hoping to start getting better so I can keep up with the kids lol

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    • Posted

      Sorry to hear of your symptoms Phil, they sound almost exactly like mine.  At first I put it down to tension and sitting over a desk all day, ie repetitive strain, especially the shoulders, neck, upper arm pain.  But then I developed the other stuff you mention, the pain elsewhere, the vague brain patterns and real sleep problems (even when stressed I've always usually slept like a log).  My doc did a blood test - no idea what for, it was all in 'code' and said the results showed no issues - he didnt elaborate.  He said it wasn't fibromyalgia but some doctors don't want to diagnose fibro as others have said, it's a very unspecific diagnosis to give a label to a range of problems that aren't diagnosed as anything else more exact.  Tension is a big cause - with your young family increasing that may have added to the issue.  If you do a job that involves repetitive actions or hunched over in one position, eg at a computer screen, that also will be part of the problem.  In addition to whatever medication you choose to take, try relaxation therapy of some kind, ie meditation, chi gung, pilates, gentle swimming, etc.  They really really help.  I appreciate its difficult with your family to care for but its essential to find 'me time' - go do something regularly that is just for you - angling, cycling, a football or cricket match, and so on - I really cant stress enough how much this will be of benefit.  I am guilty here too, we all get so wrapped up in fire fighting the daily grind and work/home balance, we forget to wind down and our cortisol levels rise (adrenal gland overworking) which can have awful physical effects, particularly tension in muscles and nerves - result = horrible pain and concentration problems.  I know how hard it is to find space in a busy life diary but if you dont, you'll end up worse off and be of no use to yourself or anyone else.  I hope you find ways of reducing this that work for you.  By the way I agree with the magnesium recommendation, Epsom salts are by far the cheapest and easiest - a nice soak in a warm bath with added epsom salts and the most important factor - lock the bathroom door so you get peace and quiet and time to relax in the bath without having to deal with the family's issues.  good luck hon xx
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  • Posted

    Phil,

    If your symptoms started just 8 weeks ago, why do they not think it's related to your being a pregnant, busy mom?

    You say it started 8 weeks ago, but that seems way too soon to put that diagnosis out there. My symptoms started 8 years ago and they just diagnosed me last month. I think you should get a second opinion. Maybe that's why Amitrip. isn't working. It's worth a try. I hope you feel better soon. Let us know, okay?

    Take care,

    Sheryl

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  • Posted

    I'm confused with your conversation

    Are you expecting your third child or not? 😊

    Or is it your husband/partner who is not feeling well?

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  • Posted

    Phil 8 weeks of pain and they diagnose fibro that in itself is a bit strange I had it 15+years before it was diagnosed and even then it was a rumy that diagnosed it not my gp although she did say she thought it might have been

    I had 2 mri scans on my neck, my hips x rayed, my shoulder x rayed and a few hospital stays as this is a horrible condition so I would question why after only 8wks are they happy 2 label u with fibro

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  • Posted

    If you read Phil's original post, it's clear that it isn't a definitive diagnosis. "Doctor says she is thinks it is fibromyaglia but it might not be" . I'm like others here in that I have had symptoms for probably 15 years but was only diagnosed last year.

    It is likely that the doctor in this case is proceding cautiously because of the short time frame that Phil has had the symptoms.

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